tag:blogger.com,1999:blog-84941341127398201302024-03-13T07:34:47.325-07:00Dealing with ALS, the wife's viewAnonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.comBlogger47125tag:blogger.com,1999:blog-8494134112739820130.post-14858335808451962052017-02-20T23:35:00.000-08:002017-02-20T23:35:11.047-08:00a year laterHere I am a year after Danny passed. I made it thru the first year. There were tears and moments of self doubt (a lot of them). But I made it. Some days I felt like I was falling apart and I often felt like I would never be whole again. The first 3 months I don't remember much. It was more like I was walking around in a fog. The next 3 I remember a lot of sadness. The Next 3 I was up and functioning. And now the first year is over. I will be honest I didn't think I could live without Danny. I really thought I would curl up and die without him. But life moved on and forward we went. Now I look back and see how much I have grown mentally, physically, and spiritually. I worried that I would let him down, even though he is gone, I had promised him that I would be okay so that has been my goal. I don't cry much anymore. Occasionally it will hit me again and I will feel broken for a short time. I think Dan would be proud of how far I have come. I think Heavenly Father is proud of me and my faith in him. A couple of weeks ago our Bishop and Pres. Moore came to see me and before they left I got them to give me a blessing. Pres. Moore prayed so sweetly for me, I felt the Savior's love and I felt like Dan was there. Then in my blessing I was told that even though it was going to be hard for the next couple of weeks that Dan would be around and he would be watching over me. That he was very busy but wanted to be here for me right now. I was told that God loves me and is aware of my needs. I was also told that all would be well. So I am doing great, I am not alone (Thank goodness). <br />
So it was not like I wasn't stressed enough but the month proceeding my one year alone mark was topped off by our oldest son (who is 32) have a "stroke" like episode. That is what the many doctors he saw in the hospital called it. He was stressed out (I wonder why) and got a migraine. The migraine got worse and he had a seizure causing his whole left side of his body to stop working. He spent a few days in the hospital was released and has to see a bunch of doctors. So every day I "babysit" my son since he couldn't even get across the room alone and he is still prone for seizures. Then I pick up his first child at the bus, get his next one home from school only to go and pick up the others at daycare. Then up the stairs he goes (with help). Then I started supper and he goes and gets a nap since he is now exhausted. I stick around until his wife gets home from work. Then we start the whole thing over the next morning. I guess my point is that my life is still hard but I am making it thru. Dan is out of pain and I am alone in my endeavors. My son, Bill is in pain and I am able to help him and they tell us he will get better every day. Life is hard. It always will be. We just have to decide if we are going to let it win or are we going to have joy and be okay. I chose joy. I look for things to be happy in. There are many good things in my life and I have found them, such as I have a daughter and a daughter in law both expecting in the next few month. I could mourn the fact Dan will never get to hold them on this earth or I can have joy that so far they are healthy and I am getting a grandson and a granddaughter. Their new lives are something to celebrate! Find joy in your life I am sure it is there but you may have to look hard for it but every time you find it will make next time easier!Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-61321063153947966862016-12-12T15:51:00.001-08:002016-12-12T15:51:29.452-08:00The holidaysI never thought there would come a day that I didn't love Christmas. A time to celebrate Christ birth. But I would rather skip Thanksgiving and Christmas this year. I am so sad and unhappy right now. I really just want to call it done and not do anything. I am sleeping super good these days, I know this because I sleep all the time! I know that it is not good for me but it is the only time when I am not overwhelmed and sad. Holiday depression has hit in the worst possible way! My kids and I are all struggling. I have a little granddaughter who lives here (with her parents) and so I have a tree up but every time I look at it I see the ornaments that Dan made. It took such patience and work to make them perfect but every year he did it. He was always the last one done and they are so beautiful. I want to just throw them against the wall! But then years from now when I want to show them to others and I want to see them again they wouldn't be here. I am in the Why me stage. Why take my husband? What did I do that he had to suffer so? Then I remember that God is not like that. But it is hard to remember when I am crying or one of my sweet babies are crying. There are so many sad things around me that I want to just get rid of but life is not like that. I will have memories surrounding me no matter what unless I want to knock down my house and have it all hauled away. Life is not like that either. I would still see his smiling face when he came in the door. He was always so happy to be home. I would still see his twinkling eyes when he laughed. I would still picture the joy on his face when he heard a baby cry. I am not sure why that made him so happy but it did. I have all these awesome memories that I can look back on but mostly I see his broken body and hear him cry out in pain those final days. I see his fear when he couldn't take a breath. I see his eyes when his vision was going and I was all he could see or hear when his hearing was going. I know his touch when it was all he hard. When his hand was cupped and I slid mine into the cup and just held on so that he knew someone was there. The days when I watched him breath on a monitor because I knew that one day soon he would stop. I see him having seizures and thinking this is it and seeing him rally and thinking I get one more day with him. That is all I can think, see and feel these days. Not the good things that I was feeling until this holiday hit. <br />
Last week one of my kids asked "wouldn't you love to have Dad back?" I said "No, I wouldn't" they were shocked. I explained. He is in Heaven and healthy and happy. I wouldn't wish him back into a body that betrayed him. He would have to go thru all that suffering again. I wouldn't wish that on an enemy and definitely not on a man I love. I want him to be where he is and having the joy that he is and serving the mission he always wanted to serve. And I definitely don't want to watch him die again. That is the worst thing in the world. Someone recently asked me would I marry again. I can honestly say I see why people would because I am so lonely. Even in a room full of people I feel alone. But unless I can be promised that I wouldn't have to go thru that again with someone else I care about I am not planning to ever marry again.Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-72890036926035236632016-11-20T17:06:00.001-08:002016-11-20T17:06:40.940-08:00what I thought I knew vs what I knowI thought I was pretty smart. I thought I was prepared. I thought I was going to have enough money. I thought that his pension would last me until SS started (turns out I have to wait until I am 62 which is 7 years from now). I thought I was strong. I thought I could handle anything I was a military wife for over 20 years. I thought I had a handle on life. I was so wrong!! I am not any of this. I have had my eyes opened so widely. I am not as smart as I thought I was, I was not as prepared to be this alone, I have some money but I don't know that it is going to last (probably not), His pension is nice but living on a thousand dollars a month is HARD. Not only do I not have a handle on life I go days at a time where getting out of bed is so hard that I don't think I can do it one more day every day! Handling things alone was hard but I knew I could pick up the phone and the conversation would go something like this "honey something happened today (or the school called or whatever) and I need to talk to you and bounce some ideas off you" so I would tell him what happened and he would talk me down from my high horse and bring me back to my nice self. Then we would figure out what to do and I would have to carry it out alone. But I had someone to talk to, sounds off with, bounce ideas off of and I am lacking that now. Some days I feel so small and many days I feel so alone. I cry so easy now. I had promised Dan I would be okay but I am not okay and some days I don't ever think I will be again. These days I am just holding on and that is all I can do. It is not easy being a widow and I don't wish it on anyone. I read and study my scriptures regular and pray regular which should bring me back to me again one day but I don't think it will be any day soon.Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-15287497491617934162016-11-11T19:40:00.001-08:002016-11-11T19:40:31.487-08:00Now I am the widowToday is Danny's birthday. I didn't think I would be writing on here anymore. But I still want to keep a journal and this is the easiest way. Plus I am still learning so many things. First thing I learned was that all these first are hard!! He died the day before Valentine's day so that day went by in a blur. The fourth of July wasn't bad. Mother's day was easy. But father's day was awful!! Our wedding anniversary was so hard. Now I have made it to November which is OUR MONTH. My birthday was last week, his is this week, our temple anniversary is next week with Thanksgiving the next. There are a lot of first this month. It feels so overwhelming! To much at one time and when I think about Christmas it makes me so sad. Today a lot of our grandkids and kids were here. It was really nice to be surrounded by love and we shared stories about Dan that we have decided is our new thing to do on his anniversary. <br />
One of the things that is driving me crazy is "pity face" People look at me like I am dead too or as if I have an incurable disease. "poor you, your husband died" "he was such a nice guy" " what are you going to do now" " are you dating yet" "You had a happy marriage so you are probably going to marry again soon" "how are you getting thru" " Are you going to move" How much money do you have coming in now" Do you have insurance" " how can you afford this/that" There is so many questions I have been asked. Here are my answers "yes, he did" "yes, he was" "I have no idea what I am supposed to do now" "NO, I am not" "NO, I am not" "One day at a time" "I don't know" Enough, not really but it is no one elses business!" "yes, I do - health (from when he was in the military) dental and vision and life I have gotten since he died" "I save for everything I need" But I really want to say "I don't know to everything!!" There is just to many decisions to be made. They tell me that I am the matriarch. But I have always shared all decision making with Dan. Every thing we needed to know what to do was decided and done by both of us. I made the decisions that every military wife has to when her husband to go and be gone for any length of time. But it is not the same as making every decisions for months at a time. It is not the same as not being able to pick up the phone and call your husband and talk it out until you could figure out what to do. They say cooler heads will prevail. But Dan was the cooler head. When I was mad he talked me down. Of course I did the same for him that is why two parents are always the best. I still don't know what I am going to do without him but I am learning more every day and it really does get easier. I know this because I don't cry every moment of every day any more. And that is an improvement!<br />
Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-17836262171134647722016-02-22T13:39:00.000-08:002016-02-22T13:39:52.383-08:00My last postThis will be my last post. My dear sweet husband passed away last Saturday 13 Feb 2016. It was awful near the end. But the end was peaceful as he deserved. I am not sure how the next few years will go but until we are together again I will be okay. He is now safe with a Father in Heaven who loves him as much if not more than I do. The worst part was the last day. Seeing him the last time, watching as they closed the casket, the full military honors was sweet but I cried so hard. When they played taps my heart just broke. He was buried on 20 Feb 2016. That day will never leave my mind and I am sure will break my heart every year for years to come. Yes, I know he is in a better place. Yes, I still love him so much it hurts but I loved him enough to let him go and to promise him that I would be okay. And I will honor that promise to the best of my abilities until the day we are together again. They tell me that this complete exhaustion that I feel is normal and part of the grieving process. That the holidays will be the worst and to keep myself busy. I have been busy for 18 months. I just want to rest now. I don't want to be in charge of anything, I don't want to be needed, I just want to mourn my dear sweet husband in my own way. I would love to cover my head with a cover in our bed and to never get out. I would love to never hear anyone call me "his widow" again. I don't want to take his name off my checking account (but they tell me I have to) I don't want to see his death certificate but everyone wants a copy of it. There are so many things I don't want to do but I will because I promised him "I will be okay" So that is my mantra for now "I am okay" and I will continue to tell myself this until it is true. It may be next month or next year but there is some time in the future that I will be okay with all this. I will never like it but I will be okay.Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-13276881398618467542016-02-14T06:36:00.001-08:002016-02-14T06:36:42.577-08:00The EndDan has passed on. It was different than I thought it would be. I guess I thought that because he was such an awesome man that none of it would be hard for him. But it was. But let me start at the beginning. On Wednesday night when everyone was gone and it was just the two of us, which never happens anymore due to the fact it takes 2 to put him on the toilet. We had a talk. It was a good talk for both of us. Things were said, straightened out, love was given and a lot of tears were shed. It all started when I asked him "if you could do anything tonight what would it be?" I was thinking if he didn't have ALS but he took it as a serious question that it was and answer after some thought "he would go home" Home to our Father in Heaven. Home where his hands, feet, and speech would work again. Home to his mom and dad, to my dad, to his brothers and sisters, to my brother, HOME. When he said he wanted to go home I knew exactly what he meant. So I answered him "then go" I told him "I love you and if you are staying just for me, don't! Don't stay here in pain, don't stay here unhappy for him. I love you more than life itself so it hurts me to see you unhappy or struggling." We cried for 30 to 45 minutes and then finished the conversation. I told him I understood that he was ready and that it was okay. I was going to love him forever and that wouldn't stop even if we weren't side by side for a short while. Within a couple of hours he had gotten a little worse. By 2 am on Thursday he was sleeping peaceful so I did, too. Thursday morning the CNA's showed up for his bath and he had changed some how. They got him in his chair and his was wheezing. He didn't sound good at all. Ruby (CNA) called and told Tracy (LPN) she needed to get right on out to check him. She got here as Ruby left. Tracy said that he had a lot of bad signs. She worked with him some and brought him some peace and comfort. By Thursday night he was on what is called comfort care. That means someone is here with us around the clock. Or at least that is how it is supposed to work. Friday night they said "he is sounding pretty good, his vitals are holding steady so we (meaning the nurse and her supervisor) are talking about just coming and checking on him every 4 hours." I asked her to stay until he woke up. She did and saw a different picture. She saw his struggle, his vitals changed, even his color changed. She didn't leave. But the next morning they left and we were set for the every 4 hour schedule. Until the supervisor came out. At that point I had worked with him for a couple of hours to ease his breathing and it just wasn't working. She worked with him for 4 and a half more before she got him where he could rest. We tried his chair which eased him for a while as Sam sat and held his hand (we had found in the days before that if I held his hand he was calmer), his bed and finally put him on his side and it eased. Kim sat down and held his hand then. Which she continued to do off and on for the next few hours. Our nurse left with instructions on what medicine to give him and when. Jeff and I noticed that his urine had turned black. That is when we knew he wasn't going to rally from this one like he had all the others. From then it didn't take all that long. The focus had changed from keeping him alive to keeping him comfortable. When they say "we just want to keep him comfortable" or when they just aren't hungry anymore this is all bad signs. When their skin gets so thin they get pink marks (that could turn into bedsores if you are not really careful) in strange spots (like on his ear) this is not a good sign. Their are so many that I wish I had known to look for. So many that if someone had told me to look for them I could have been more ready. Not that I wasn't because that last hour helped us all be ready. He was suffering, he had turned down pain medicine the whole time but didn't in the end. He wanted it then. I had never wanted him to suffer. I didn't want him to have any pain. It was what my prayers had been about. When I realized he wasn't going to get well I had changed how I prayed. I wanted him to go easy. Like he lived his life slow and sweet. But that wasn't to be. At least not exactly. Back to the bed. Once he was on the bed and everything had eased it was such a blessing. I was so glad that he was resting because he looked well when he was resting. His color had changed back to normal, at least on his face. And he didn't look scared. Mostly he didn't seem to see us but recognized our voices and the feel of our hands. Kim was holding his hand and had been listening to him breathe for hours. It is what we did and had been doing for a while. When she noticed that his breathing had slowed way down and gotten peaceful. She could feel it happening from just before his breathing slowed. she looked up but couldn't find the words to call out to anyone. But Scott looked up and saw that her face had changed and went in to see what was wrong. He called Tamera, who called to Mandy, who called to Jeff and around the house the calls went. Bill walked in the door and into the room with him just before he passed away. He was surrounded by the family he loved more than life. He had most of his kids with him. He wasn't alone and that had been on of his main concerns early in this illness. Now comes the hard part for me. I have to plan the funeral again, write an obit, and pick a tombstone and then plan a graveside service. My dear sweet husband, the love of my life is gone and I don't know what I am going to do. For the last 18 months we have been side by side, day in and day out. For the last 35 years I have been a wife to the most wonderful man I could have ever found on this earth. Right now I don't know who I am or what I am going to do. But in honor the God who loves me, my dad who raised me in the gospel, and Dan who told me to be happy and loved me as only he could do I will move forward on the path back to live with Heavenly Father and Dan and I will be together again. I will be okay because I promised Dan I would be. I will be okay because I still have our children and grandchildren by my side. I will be okay because I am the daughter of a Heavenly Father who loves me. Eventually I will be okay. Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-36687946063831709292016-02-06T23:15:00.000-08:002016-02-06T23:15:36.710-08:00I am tired, more tired than I have ever been in my lifeAs we are nearing the end I can understand why he can only be so sick. I am tired. I am so tired I worry that I am forgetting something or not being as careful as I should be. I am so tired that I often think that if I could sleep thru just one night I would be in Heaven. Just one. I hear new moms complaining about their baby waking them up every 2 hours all night. I would love to sleep for 2 hours at a time. But nope it is not to be. He moans and groans all night. One night I didn't sleep at all because I could see thru our monitor (I got a baby monitor where I can see and hear him) that he was turning his head to and fro as if in incredible pain. But when I asked him the next day he said no that he wasn't hurting at all. I think his pain tolerance is really high and his pain just doesn't wake him. I am sitting here at 1 am listening to him moan/talk/sing. I am not sure what the noise is supposed to be but it is a new one so I am scared it is bad. I go to bed between 2 and 3 most days because he calms down some by then. Then he wakes up during the night and then I finally get to hard sleep by about 7, you know when most people are getting up. Sometimes I sleep on the couch the last couple of hours while he "watches" me. He sleeps better when I am close and I get more sleep that way but the couch is so bad on my back. To top it off I still have a cough so when I lay down I cough and cough. Then that wakes me up. So basically I am not sleeping good at all. Last night I convinced Dan to take some pain medicine thinking that he would sleep better if he wasn't hurting and he did but then he wanted to sleep all day (which he does most days now anyway) but he refused to take it again tonight because he wants to go to church tomorrow. So I gave him a bath tonight thinking he would sleep better but that is not to be because here I sit still listening to him. Tonight before he would calm down I had to look at his butt cheek. He was sure there was something wrong with it. The only thing wrong was that he had sat on the toilet to long so it had part of a red circle on it. But I will have to keep an eye on it for a couple of days to make sure a bed sore doesn't become of it. There are so many things to watch our for and do every day. Day in and day out it is exhausting. I can understand the other wives whose husbands have/ had ALS saying that they were exhausted by the end. Because Jeff and I are both so tired. Other people come in and seem to be bubbling with energy and I have to wonder I am just so tired that they just seem to bubble or have I changed so much that I have lost mine so theirs just seems so LARGE! But they all seem to have waterfalls of energy and I feel like mine is a pond, never moving just going stale. Well, I learned new stuff this week but I am just to tired to type more. So have a great week and remember no matter what God knows who we are and loves us. He knows my name and my needs and He thinks I can do this so I know I can. I just have to face it one day at a time.Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-15832230028192720642016-02-01T15:43:00.002-08:002016-02-01T15:43:07.307-08:00What does the end of the end mean? Respite care stinks!Dan went in to see his ALS specialist last week just about he time I got super, super sick. So I got to be in on the appointment thru the phone. Doctor told us we are at the end of the end. It will take anywhere for 1 week to 1 year. Well, that gives me a lot of lea way. I asked him if there was some thing I should watch for to call the doctor, nurse, 911 or anything? He said yes and gave me a list to which my answer to each was he already does that. By the time he got to the end of the list I said <br />"oh" and he said call him if I had any questions or concerns. When I asked him when we should make a follow-up appointment, he totally hesitated. Then had Jeff make one for 10 May. It is assumed he won't make it until then and if he does to make it a call in appointment. He thinks Dan will either be gone or not able to come in for an appointment because he is to weak. <br />
Due to me being sick we have had our first experience with hospice respite care. He hated it! I have often been told I spoil him. But you know what after the last 4 days of respite care I realized every person who is loved deserves that not the cold place that he was just in. We should all spoil those we love. I couldn't believe that he came home sicker after being in "professional" care than he does when he is here with Jeff and I doing "the best" we can. He now has many bed sores (only gone 4 days!) He hadn't had a bath the whole time. The list of things that went wrong is so long!! If you have to put a family member in a "old folks home" keep watch on them. Go every day and stay on top of visits. I believe when they know someone is coming they take better care of your person. I just want you to know we had people up there a LOT and yet still he didn't get the care he should have received. He is home now, clean and napping in his chair where he belongs. Yes I know his time is short but I have decided that I would rather he be here and me make a mistake that makes him sicker than have him stay one more moment in a place like that!!! I think my mistake would be made in love and he would be surrounded by people who love him more than life. But I have gotten pretty good at this and don't make mistakes much any more. I do the best I can and let love do the rest!Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-87675566493960485392016-01-23T21:09:00.000-08:002016-01-23T21:09:16.012-08:00Progression and learningEven after all this time I am still learning so much. Our CNA is quick to say she learns more at our house than in college. Dan has been running some fever pretty much every night and sometimes in the afternoon and evening too. The on call nurse last night told me his rattle was gone (it has been there for 3 days and we haven't done anything to get rid of it since there is nothing you can do) and that fever was typical in ALS patients. I am not sure I believe her in either case. That just doesn't make sense. I can't find anywhere where it says that he will run fever with ALS. Well unless he has an infection. She asked about him possibly having an UTI. Well the urologist told us they would say that a lot. He warned us that every time they don't know why someone with a catheter starts running a fever they would blame a UTI. He said seldom to never is that what it actually was. We have seen 3 more urologist since then and they all said the same thing. So I think since his urine is good color, no blood, no funny smell that a UTI is not the problem so I told her so. She said "well that makes sense" So who knows what is going on. In the mean time I am watching him and listening to him carefully so that I don't miss what someone is missing. I know his time is short I can tell. He also got a blessing the other day that said that he would soon be with his father and his Heavenly Father. Soon in the Lord's time could still be way out there but we have already made it way longer than everyone thought. We are past our 6 months of Hospice. That is all your are supposed to get. But because he is still going downhill they had to re certify us or whatever it is called to keep us on. But still he has made more than 6 months. Dan has a doctors appointment next week with his specialist (the one we trust) and I am excited to hear what he has to say!Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-64066105396577199942016-01-12T20:29:00.002-08:002016-01-12T20:29:13.742-08:00Nearing the endI have found that even though we have talked about it for over a year and we have planned for it as it gets closer it gets harder. I couldn't imagine it could or would get any harder but it has. He is doing terrible and his breathing is so shallow. He is sleeping A LOT!! I think he is just exhausted from trying to breathe. He had a seizure on Saturday night. I didn't know what it was but he awoke with foam coming from his mouth (a lot!). I cleaned his up and it was so cold he didn't get to go to church. Single digit weather just doesn't seem like the time to go out for someone with weaker lungs. But night fall he was coughing more. Sunday night he had 3 seizures. One of which I saw which is the only reason I know what he was having. Last night he only had 2 so I consider that a good thing. He looked bad this morning and can barely stay awake these days so they have changed him to Qt10. I understand that means a nurse every 12 hours and more CNA visits. Tonight there was a nurse here that checked him out and he looked a little better than this morning. He is still super tired but his color is better. I am pretty sure we are getting closer since he looks like it, breathes like it, and sleeps like it. Tonight I asked some questions like what do I do if he dies? Who do I call? (hospice) What do I do then? (nothing they handle everything) Who calls the funeral home? (they do) Will he need an autopsy? (no thank goodness). And many many more. I am a planner I have to plan something to be happy. So we are getting closer and I don't have to like it but it is getting here.Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-10358585317436676372016-01-02T23:17:00.001-08:002016-01-02T23:17:31.526-08:00CPAP vs BiPap Dan used his BiPap for a short time. He was using the one called a Trilology (sp?). He really didn't like it but I made him give it a honest try. He used it for a month or so and then refused one night. He said no that he didn't want it anymore. He was scared when he wore it that he would throw up and choke to death. It also made him feel like he was suffocating. He didn't like anything about it. He said he would use his Cpap but never his Bipap again. Well the only other thing he has totally refused was morphine. He really didn't like how it made him feel and he made me promise to never give it to him again. So when he refused the BiPap I didn't complain. I explained to his hospice nurses how he felt and told them I wouldn't make him use it again. I never want him to be afraid. Now for this weeks problem- He can't turn it on any more. You have to breathe and then it will automatically turn itself on. He doesn't have enough breath to do that anymore. So now I always give him a chance but he couldn't do it all week so I guess that is gone now. <br />
He also can't get his mouth open enough to brush his teeth. So I use a sponge to get his mouth as clean as I can. And then his lips are so dry the skin peels off or at least that is what it looks like so we use a sugar and a few drops of water to make a paste and then I use it to get all the old dry skin off. So that it doesn't bother him.<br />
His skin is breaking down, too. So we are working with bad elbows, heels and tailbone. The hospice nurses have ordered us some new sheepskin heel covers, and some elbow covers. They will hopefully help some. I worry with him having so many sores on him. But I am doing the best I can to keep the ones with holes doctored with antibiotic cream and bandaides. And the ones that are not holes yet we keep skin protectant on. It seems like things are happening so fast but he is still alive so I will keep doing my best for him and pray it is enough.<br />
We had a talk this week in which I assured him that I was going to be okay. That he didn't need to worry about me. I wanted him to relax and not worry about anything. When it is his time to go I want him to go peacefully. Everything I have read says that it makes a difference. I will never want him to be in pain and I will never put myself before him. I want the best for him so I want him to be okay no matter what. The biggest lesson I learned was that we have to put others first. If you love someone they should come first before all else. I would never put my wants before his. Love really is unselfish! Or at least the love we feel is!<br />
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This is Dan the day before Christmas. He was watching us all play and watching me play with the grandkids. I felt bad but he said it was okay that he just enjoyed watching me be happy. He also says that with food. We all feel bad eating in front of him but he said our enjoyment with food was enough for him. If we wanted to we could join him for a can of Levity. But that stuff doesn't smell like anything I would want to put in my mouth! Not that he didn't taste it first because he did. Long before that was all he got to eat. He said it wasn't bad, it is mostly corn products and that was his favorite food so maybe it is not that bad?</div>
Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-26764225559088086792015-12-28T17:13:00.002-08:002015-12-28T17:13:19.993-08:00That is important to meJust when I thought things had eased up a little it all came crashing down again. He is not doing well at all. His color is not good and he is sleeping a lot during the daytime. He is very clear on the he is ready to pass on and go "home". He is not scared of dying and has finally accepted the fact that he is going to go soon. He told me last week that he knew this was our last Christmas together. So we have really been putting some effort into enjoying every minute we can together. I asked his nurse what we needed to be watching for so I would know when to call the kids in. She gave me a list of 5 things and only one has he not done yet. That one was a rattle in his breathing. I asked if that was only when they had pneumonia and she said no that they all rattle. I hope she was not talking about the death rattle you hear when they are passing away I really need more notice than that! But the other 4 are here already. From everything I have read he is in what they classify as "the final stages". It really seems to have whipped up on us! Some of the other signs are 1- shallow breathing (his is very shallow) 2- they run a fever (his comes and goes so I consider that a plus). 3- sleeping a lot during the daytime (and at night). He sleeps a lot in the daytime and always seems so tired. 4- Is the one I can't remember right now. But the good thing I found out was that if you choose to go the natural way and not do all the machines you go peacefully in your sleep. Many family members of many ALS patients say it is peaceful and easy on them. But if they choose to do the machines/ trac/ and all these other things to extend their lives then they are the ones that get pneumonia, a P.E. (blood clot), heart attack and such like. They are the ones who have a hard time. When we found all this out Dan had filled out and signed his medical advance directive and his DNR a couple of days before. Now we are really glad he has decided to go all natural. At first when he decided it I was upset but I agreed because it is his body and his choice. I wanted that extra time with him. But I have to put him first because I love him. I thought about it and decided for myself I would much rather have him go peacefully in his sleep that chocking to death with pneumonia. He had a PE before and it was so painful he cried I can't imagine how much more so it must be to kill him. And I have heard a heart attack really hurts!! I don't want any of that for this dear sweet man that I love. Yes, this is hard but that is not part of this equation at all. I want the best for him. As long as he is alive I will pray for him. But now that he wants to go back "home" my prayers have changed. Now I pray that he will be happy (so he will want to be here still) and that he won't have any pain. That is important to me.<br />
Here is a couple of pictures of him with our latest grandbabies.<br />
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This is him with Jaclyn. Our babies baby. She really loves him.</div>
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And this is him with 3 month old, Madison. She will just sit in his lap and lay there forever.</div>
Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-20108804918833701822015-12-14T15:29:00.002-08:002015-12-14T15:29:28.403-08:00He wants to go homeWe had a tough week here. It has been a few weeks since we had anything bad happen so I thought we were mostly stable and wasn't as worried as I could have been. Soooo what happens? It all comes raining down on us. His feeding tube got infected and then the next night- he had blood coming out of his penis. A lot of blood! So here came the nurse again. The next night he started aspirating and gagged for 15-20 minutes. It was terrible!!! Tracy, our LPN said we were testing her to see if she always wore her uniform even to sleep in. Now every day some of his skin gives and he gets another sore. He only has 2 so far but is having problems with those two. So a whole week has gone by and we had problems every day!! Yesterday we were talking and he wants his DNR put back in place. He said "I am ready to go home" Since we were sitting in our living room I can only assume he means back to live with Heavenly Father. He tells me he is tired and wants rest. He doesn't say "to rest" he just says rest. I know this has been a long battle for him (and for us all) and I think that he is ready as he says. He has told me he has no reason to fear and I know this is true because he is a good Christian man who loves the Lord. I asked him to try to stay at least thru Christmas so that the kids can have one more Christmas with their daddy. But I don't know if he has the energy to try anymore. It is so hard for him to even get a word out and he has a lot of pain now. He hurt from 2 am until 630 when he finally gave in and let me give him some pain drops. He usually doesn't want to take them but gave in this morning so I can only assume it was pretty bad. We will be praying for God's will to be done. But I sure don't like to see him suffer and I know the kids and Jeff don't either. So we pray he won't suffer and that he can find some happiness in every day.Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-43043984098782427862015-12-07T13:05:00.002-08:002015-12-07T13:05:28.576-08:00I want my life backYes I know this title seems selfish. But I want to wake in the morning to hear Dan singing in the bathroom because he forgot he is home and not in a hotel in some other country. I want to hear him whistling a happy tune as he is doing service for someone who stopped by because they needed something. I want to walk along holding hands with my sweet husband while he looks over at me and smiles. I want the bathroom door to open and the smell of MAN to come out. I want to shave ( I do a terrible job and he is so good at it). I want to sit in the quiet of my house with the smell of supper cooking while I wait for Danny to come home. I want the things that we put off for later to be able to do. I want the vacations we were going to take when we got older. I want old age with a husband who loves me. I want the Danny of old. But that is not to be. And I am sad about that. But I still love Dan with all my heart. I wouldn't trade every day together for anything. I want every day I can with Dan. I thank Heavenly Father every night for letting us have one more day together. I am blessed and I know that but I sure would have enjoyed old age with Dan by my side. <br />
Dan has run fever the last two nights and I thought I was paranoid before but I sure am now. If I walk out of the room for anything I am scared to walk back in for fear that Dan is dead on the other side of that door. Now I am terrified! I hate it when he feels bad. But when he is sick it is so scary!! Every time we face something new it is just terrifying. But we face it and get him well. So we washed him and cooled him off, then gave him some aleeve. And waited and waited. Finally his fever broke and all I could feel was relief, a deep Ahhhh. We had made it past another scare. Then the next night it came back and we went thru it all over again. Today he is looking good so we are praying that we are thru with that. But I sure wonder why?? But that is part of ALS wondering what is coming next and why and how are we getting past it. What do we need to do to keep Dan alive and well. Every day a new adventure.<br />
Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-72302106507975572382015-12-02T21:46:00.001-08:002015-12-02T21:46:04.906-08:00As the bad weather approachesMany people have told us that as the bad weather comes in that ALS patients heath goes down. But so far Dan is stabilizing. I love that. I thought we had a problem but it turns out that I was putting him to bed to close to brushing his teeth. He always drinks water then and the water was causing the choking. So now that I figured it out and shifted when I brush his teeth not more choking sounds and no more gagging. So far so good. We have decorated for Christmas and He is loving out new outside lights. We got the projector lights so no climbing and not hard at all to start and stop. I love it, too! Our tree is up and lite and that makes him happy, too. I think we are going to be okay but we are not going to get out much and that really seems to help when it is cold outside.Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-4113350867120148542015-11-29T21:12:00.001-08:002015-11-29T21:12:44.642-08:00Things keep changingSo while we were in Louisiana we found out that drinking Lemon water (its a natural diuretic) will keep the swelling off Dan's hands and feet. In the beginning when we were first on Hospice we found out that Papaya juice will lower his phlegm. Sounds like Dan needs to drink a lot of juice. So I thought we were doing pretty good but I think I was just trying to not see the new signs. It is so hard to see them and know that he is doing worse and there is nothing I can do about it. Every night now he aspirates. He chokes and chokes and it is getting worse. I will have the nurse check him out tomorrow and see if there is anything we can do. He is talking less and less, he just doesn't have the air to do it. Once again I am watching him get worse and I have to adjust to something new and pray this is not the thing that is going to kill him. I want him to stay around until we are 90! I just want to grow old with this man of mine. <br />
Today the weather was bad and I gave the decision to Danny whether he wanted to go to church or not. I knew that letting him go out in the weather ups the chance of him getting pneumonia which is what kills most ALS patients. I felt very strongly that when a spiritual question comes in that that decision needs to be made by the person. So he had to decide. When he woke up the weather was a little better but not great and he decided that he would rather stay home and be safe. I will admit I was so glad. I know it hurts him and makes him to sad to not go to church but I just want him around for a while. When the ramp was icy I felt like I could just say no but when it was mostly clear it was his call. <br />
He is doing more leaning so that is not good either. It won't be long (we have been putting it off for weeks) before he has to stay in the hospital bed instead of going up the stairs on the lift due to safety. I hate when that day comes. My mom has been here for a few weeks and it has been wonderful. She is so good with Dan and they sit around and she talks and he smiles. I take a nap so it works for us all! :) <br />
We are hanging in here and wondering what change tomorrow will bring. Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-71608424328039104192015-11-16T20:49:00.002-08:002015-11-16T20:49:42.029-08:00Vacation to Louisiana and MississippiWe had a wonderful vacation filled with people who loved him enough to come a ways to see him. He loved being loved so much. He really basked in the attention. We saw people who we hadn't seen in forever. I think that it is a case of they didn't want to wait until it was to late. Plus, they realized that there might not be a tomorrow that they can see him in so they needed to do it today. What a great lesson for us all to not put off until tomorrow what we should be doing today. So if you have a dress you want to wear, a dish you want to try or use or anything else you are putting off. Stop it!! Do it now and enjoy your life!! <br />
This week Dan went into the Neurologist for his check up, and found his reflexes are down from 2.8 to 1 something which of course is a concern. When they tried to take his blood they couldn't get any out of his good arm after a few pokes gave up and went to the bad arm and got it there. But that was a little concerning too. His speech is going more everyday but he is learning to smile thru it which is great! I really hate when he is sad! I wish you could have seen his face as his sisters tried to figure out what he was saying and laughing with him. He was really enjoying it. Maybe we have reached a plateau there so he won't be so frustrated. For some reason the last two weeks have seemed a touch easier. I have found bed baths are hard but if I do it while he is on the toilet it is way easier! So we are adjusting to make things easier and anything that could do that is my friend these days.Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-73665364478212669222015-10-26T10:32:00.000-07:002015-10-26T10:32:18.802-07:00Faith, a little goes a long wayDan has decided finally that he can get well. My problem with that is that his faith is in a little pill that isn't FDA approved. They can't even use the name of the pill on their website. That is not a good thing to me! But he is sure that little pill, with some fat, and a lot of water will make him well. I wish that faith was more in the Lord and less in a man's word. He says that every time he prays to get well that, that is what the Lord tells him to take. But he was sure that it would work from the beginning. He took it for a while but it didn't seem to help back then but a little faith in said pill might make it work. Who knows. He did drop out of the clinical trials but that was because they just weren't helping him at all. Matter of fact it seemed to make him get sicker faster. <br />
We have had a hard week. Between a biopsy, a breast lump, and a growth in my daughters uterus. But we have had all good reports so far. Dan's got a slight rattle in his chest and I have one more report to get thru and we are solid again. We are excited that things are going so well. We need that in our lives.Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com1tag:blogger.com,1999:blog-8494134112739820130.post-11199289221752535722015-10-18T23:08:00.001-07:002015-10-18T23:08:10.775-07:00I am tiredNo one warned me that this was going to be exhausting. No one said it would be easy but I was not warned how hard it was going to be. Some days I feel so weak that I don't know where I will get the energy for one more need. Tonight I had to do all kinds of things for this man that I love that I never imagined doing for anyone. It is a hard job taking care of him and gets harder every day. Honestly I am just done. I feel overwhelmed and so tired that I can't see straight. Yet I am sitting here at 1 in the morning because I can't sleep. I have realized that being tired and being sleepy are two totally different things. Tonight was just a really hard night. As he called me over and over and over for more and more needs. I was sitting in our bedroom and he was in our bathroom. He has pulled things like this before but it has always been when he was scared and he was afraid he was going to die alone or he just wanted to know he was not in the house alone. This time I think he just wanted to see how many times I would come to the bathroom. He finally has decided that it is almost time to move him to the hospital bed. He can tell that Jeff is doing all he can and it is just barely enough. It won't be long before Jeff can't pick him up anymore. Then he will be in the hospital bed. We will have to once again rearrange the house so that he can have what he wants and needs near by. Another thing I realized today that at least one of our grand daughters are scared of him. She was playing tea party across the room from him and when I told her she could ask him she looked at me like a scared rabbit. I even helped her so she would relax or at least I hoped so. But no go. It is something I will have to work on. Because I can tell by his face that it hurts him when they are scared of him. So lesson of the week, talk to every one explain what is going on and why and most important explain that they can't catch anything and it won't hurt them even though it is hurting him. We don't learn a lot of new things anymore since he is probably at his worst or at least pretty darn close. He can't use any of his muscles. His bladder, lungs and now bowels are either not working or pretty close to done. His tongue doesn't work so his speech is awful. He tries to talk in paragraphs and I may catch one word. I try to pay attention to where he is looking so that I have a guess but it only works once in a blue moon. Next lesson- get everything signed early because that is hard enough without you having to sign a DNR for him or filling out his advance directive that says no machines for him. It feels like I am signing his death warrant but it is how he feels and by the time we got hospice he had already made these decisions just hadn't signed anything. So get it signed! That is it for tonight I am going to try to get some sleep. He changed from his bi-pap back to his c-pap and is noisy again but he can sleep better. No rest for the weary but there is for the sick and since it makes him happier that makes my life a little easier. Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-73919578659726692762015-10-12T16:22:00.002-07:002015-10-12T16:22:18.806-07:00Here we are againSo here we are. It has been a tough couple of weeks and I got a bit down last week. I try not to because it makes things harder for us all. I haven't been able to help as much since I have been sick. But tomorrow is my procedure and hopefully the doctors will figure some things out and I will be back to work, helping Dan again. He is a lot weaker, has a really hard time talking because he is out of air, and is using more tube feeding than ever. He uses the tube twice a day and has a milkshake for breakfast. He loves that part! :) By the time I get done it is about 1100 calories which is still only half of what they want him to take in. But I add Carnation instant breakfast, a protein drink, milk and then a lot of ice cream. He really enjoys it. I think he misses a regular breakfast but most things won't go down. He just chokes and chokes. It is really hard. A couple of nights ago it sounded like he stopped breathing. There was a couple of minutes there where I thought he was gone. It scared me at first and then when we woke up the next morning and he was crying because he hurt so bad I realized that it would be a good thing for him not to have to hurt any more. I hate that he is in pain and he hurts so bad some days that he shakes with it. It is so hard, because I am trying as fast as I can to get his pain medicine in but it just doesn't seem fast enough. So we are having out ups and downs, as usual. By noon every day he is exhausted and his speech is really airy. It is really hard for him to communicate. Every one keeps looking at me like I know what he is saying but I have no ideal!! Some times I can get a word here or there but these days he gets frustrated with me but I really am doing the best I can. I am home from having my procedure done and barely awake and he is already wanting me to get things done for him. Sheesh! I am so tired but that doesn't stop his needs. I better get back to work!Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-69388759115604114402015-10-04T20:06:00.000-07:002015-10-04T20:06:03.426-07:00Not sureWhen I first started this blog I had so much to say. These days I have gotten so quiet. You need to understand this is just not me. I can go hours without saying a word in a room full of people. As he gets quieter I am getting quieter too. As I sat and watched General Conference today they spoke on the 3 apostles who had died and the strength they saw in two of their wives (one wife is already passed on). I really stated thinking am I going to be that strong when it is Dan. Am I going to truly be okay or am I going to be tired and bitter. Will I spend all my time alone or will I get out and make friends, take a class, go to church? What am I going to be like? All I have ever been is Dan's wife. I find myself getting so sad. I started taking depression/stress medicine over a week ago. I am not sure it is helping because I am so introspective today. My biggest fear is will I feel like I didn't do something just right? Or if I had tried one more thing would it have worked? What about if I had talked him into going off those clinical trials would he have lived one more month/week/day? Will I have so much guilt that it will wipe me out? Or will my inner strength come thru and make me strong. Will the strength that got me thru all those years of raising my kids while Dan worked crazy hours or while he was TDY or while he was out of town. Will my faith sustain me? Will it make me whole? I am just not sure what will become of me or my family. So I pray every day for courage and strength but will it be enough. I don't know but as he gets sicker I pray harder. I pray that I am making the right choices, that this is God's will, and that Dan is happy. There is not much else I can do right now but pray it is enough.Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-9021386162269137872015-09-25T23:10:00.001-07:002015-09-25T23:10:19.081-07:00Communication is the keyLast week was a rough week. I honestly didn't think I would make it. Between the chest pains and the flu on top of the doctor putting my on a new medicine for stress and anxiety, which by the way makes me sleepy if I take it in the morning and keeps me up if I take it at night. Either way I am blurry. I feel like I am on drugs which I guess technically I am. Anyway- My being sick got the message thru to my kids that I am not young and can't continue to do everything. So I am having more help around the house which is super nice. <br />
Dan is talking softer so I can barely hear him most of the time. His head falls forward and when he picks it up it rocks all directions and he can only hold it up a short time. It is super sad for him and I can tell it makes him tired really fast. He also had his first catheter change out here at home and when he cried out I wanted to cry, too. It was pretty awful. He gets tired faster. He has been getting sponge baths since it is so hard for him to stay up but asked tonight before bedtime if he could get a regular shower tomorrow so he would feel cleaner. So we are going to try. Last Saturday I had to hold him up while she washed him. Not easy on either of us. Some times his legs go to sleep and then getting him up is almost impossible. His legs almost always stays bent now when he is kinda upright. So he looks like an S. And he has lost a lot of weight. He is down to 194 from 244. So they are watching his diet more. There seem to be more changes than anything around here. The one good thing is that he is not talking in paragraphs anymore, well not much anyway. He mostly talks in one word or a sentence. He also spells a lot which basically means that I start at A and he nods when I get that letter right and then we go to the next letter and I start guessing at A again. I never realized how much all the letters rhythm until he got sick. We were talking the other day about if he could get just one thing back what would it be. I choose speech. I think he would love his hands. Both of us wanted a way to communicate. I never realized how much time we spent just talking to each other. Whether early in the morning in the bed, on the phone while he was away or late at night just before sleep. I miss that more than anything. I want to know what he needs, if he hurts, how to help him. All the things I took for granted hearing from him, I want to hear just one more time. But it is not to be and I have to get used to it. It took me months to get used to not hugging anymore. Something we had done all the time but starting hurting him so we had to stop. Or holding hands because his fingers cramped up. They are not in a curved shape so we kind of hold hands again now. Now we are adjusting to something new. Every week something else new. Some days I think I can't learn one more thing and then I do. You can feel so overwhelmed! Now he is tube feeding, which by the way you start with a half can just to see how they tolerate it and work up to a can and then more as needed. Flush with 60 cc, one can and then flush again with 200 cc. Jeff can do it as good as I can now. Learn as you go. Learn one thing at a time and you will surprise yourself by all you can do!Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-18362043883739107772015-09-16T19:23:00.003-07:002015-09-16T19:23:50.003-07:00My hospital stayI learned some interesting things this week. One that if you are having chest pains you have to go to see the doctor. Who will put you in the hospital. Then you will endure a ton of test and come home a day later feeling gross and bruised. In the meantime Hospice had to come in and take care of Dan. Things I learned about hospice. First for a year and a half after your spouses death you can get counseling for free. Next in case of emergency they will come and do your husband's meds and supposedly anything else you ask for. But for us they didn't even put his bipap mask on. So my lesson of the week was you need to teach everyone you know how to do his medicines, bipap, and anything else that you do. We do things so without thought but make a list in case someone else has to do it. I had never planned to have chest pains (which turned out to be stress, as if I didn't know that). I had never planned to not be available to help Dan with whatever he needs. As the lessons we have learned of old- Plan ahead because you don't know what will happen tomorrow. What if you were hit by a bus walking across a street. Be prepared!Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-11483820674782537252015-09-12T20:22:00.001-07:002015-09-12T20:22:16.351-07:00VacationSo we went on our first vacation since he became so disabled. It was truly a learning experience. I learned so much and a lot of it I can't even put into words. First- No one else knows how to take care of Dan so even if I go where they want to take care of him there is only so much they can do because it has now become second nature so I do a lot without thinking about it and I will leave it off a list if I am asked to write one. Second- if someone else volunteers to get him up, dressed and feed him breakfast let them. What a blessing that was. I realized that it was the first time in over 6 months that I didn't do it or at least have a big hand in it. <br />
Third- Let others serve him. It helps them while giving you time out. What a blessed time it was. <br />
No they can't do everything I can but my goodness what a relief it was to not have to do so much.<br />
Fourth- When traveling carry everything (medicine wise) you can ever think he might possibly need. There is a LOT so take a van with lots of space. Take both the electric wheel chair and the manual one. The manual one is much easier to get in other people's houses who have stairs or even a big enough bump that the electric wheelchair can't get in. So you can visit everyone you want to. <br />
Fifth - give yourself plenty of time to get there because it is going to take longer. Much longer than you plan. Plan to spend the night somewhere. We went 10 hours one day and it was a long day and we were all way more tired than you can imagine. <br />
Sixth- lower you expectations.<br />
Seventh- Get a hotel room with a disability setup. Make sure it has a roll in shower because the transfer tub is nice but I could have never gotten Dan in there. <br />
Eighth- If you have hospice let them know a week in advance (or more) because they will set up hospice care for you wherever you go and you will still have support.<br />
Now since I have gotten home I have learned that if you have anything on the inside of the tube of his catheter then it can clog up the works and cause a major blowout and then the pee will flow in his pants instead of down his tube as it is supposed to. After the blowout the bag will fill up quickly because it is now flowing but at that point change out the tube and bag so it won't happen again. <br />
Last but not least, you know how everyone has a "I know someone who died of ALS" story. I got one today that gave me hope. When it first started I was so sad. I am not sure why anyone wants me to hear how their family member suffered and died. But they all do. Today's was good. The father hadn't been suffering at all and just died in his sleep one night. No pain no agony, no pneumonia, no anything bad he just went. So I am now praying that is how Dan goes. What a blessing that family had. Every time Dan says he hurts wherever it hurts me so much that my stomach tightens and I feel a little like I am dying inside. It is horrible to see and feel. Now some people think I am so great because I am still here and still trying to do everything I can do. But that don't see me in my weak times. Some times I just want to curl in a ball and block out the world or just cry until I feel better. But I know it will never happen. In the beginning I thought that I wanted to go first so I didn't care about me or my life anymore. I had to learn how to be careful again. I am just a human in a horrible position. One that I would never wish on anyone. Some days I can just barely survive the day. Then there are days like today when for just a minute after I wake up I think it has just been a bad dream and that he will be okay and then I open my eyes and start another day. Just hang in there no matter what. That is what I keep telling myself. I will make it thru this, too. For this to shall pass.Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com0tag:blogger.com,1999:blog-8494134112739820130.post-59236862626959057952015-08-29T19:50:00.001-07:002015-08-29T19:50:17.477-07:00VacationWe are on vacation. I didn't know if we could make it but with help from my brother we are in Idaho and spending peaceful time with our son and his family. It was actually a nice trip. It took us a lot longer because we stopped to spend the night and stopped every couple of hours for him to have a break. But it was nice. It has been good to be here. Dan has seemed more peaceful and happy. It has been nice being in a smaller place so I can always hear Dan when he needs me and he loves that. It has brought him such comfort knowing he is not alone and won't die alone. He even let me leave his mask on while I wasn't in the room. It was a nice change and I have been able to take longer breaks because he feels secure. I am thinking about getting a small apartment to live in until our house is finished. If it brings him peace and makes him happier it is worth it. We will see how I feel in a week. If I still feel that way I will get on it as soon as I can. Only bad news is an increase in how he is drooling and still having bladder spasms. But nothing new. Thank goodness! Anonymoushttp://www.blogger.com/profile/01801575331361536347noreply@blogger.com1