I have received several e-mails asking how I am doing and saying that they miss me here at Joan's. I thought I would update you, and let you know that this is one of the "futures" that no one wants to experience. I remember several years ago, while we were all pulling our hair out about the driving issue, the mail issue, the sundowning issues, the escaping the house issue, etc....there was one lady who posted (and still posts here - thank you, Sandi*!) that after her husband became bedridden, she brought him back home and took care of him for THREE YEARS until he passed away. At that time, my heart and soul said "Please, Lord, don't let that happen to us!" Well, I am on the eighth month of the bedridden stage.
My husband is the equivalent of a two month old. He can't talk, show emotion, barely stand up with two people assisting him, and has to get reminded to suck through the straw for nurishment. I won't go into further details - use your imaginations. Until this past two weeks, I was able to stand him up and move him from the hospital bed by standing him up, "dancing" him the two steps to his recliner and put him in it. I did this only on the weekends when I don't have help. Both Sunday nights, his legs gave out and he sat on the floor. I had to call 911 for help Sunday night when my neighbor didn't answer their phone. When they saw the firetruck outside, they ran over without shoes on to help. They had been bathing their baby and hadn't heard the phone. They gave me his cell phone number because he says he always wears it, and they could not apologize enough for not being there for me. So last night, that dear young father came over at 7 to see if I needed him because he and his wife were going out and they wanted to make sure I was okay - and had asked the neighbor across the street to be on call! I am SO FORTUNATE to have such good neighbors.
My husband used to open his mouth when you approached him (for food), but now, you have to remind him to open his mouth. His foods are mostly vegetables, with chicken and beef totally tender and cut into very small pieces - and he gets several fruits a day - bananas - either mashed or Junior baby food; diced peaches in those little cups, mandarin oranges, applesauce. He also seems to enjoy the pudding cups for his evening snack each day. I make sure that he gets more than two glasses of cranberry juice a day and plenty of water - all through a straw.
I'm going into details here so that if any of you end up where I am, I may have been able to give you help. Other than talking to him while I'm changing him and feeding him, the TV being on movies he used to love (sometimes you can imagine that maybe something will click), there is nothing else to do for him. He doesn't know me, doesn't know what is happening to him, can't do anything but sometimes moan in his sleep. It is so sad to watch him slowly pass away day by day.
The Hospice nurse has been telling me for a couple of months that he could have an "event" and go at any time, or he could continue this way for many months.
I still work full time. I have an in-home caregiver that comes at 7:30 every morning so that I can go to work, and stays until I get home at 5. A CNA comes Mon-Fri and bathes my husband, shaves him and brushes his teeth. When I get up every morning, I start my Keurig for my cup of coffee and give my husband his morning meds and juice. Then I get dressed for work while having my coffee. The caregiver gives him his breakfast as I leave for work. After I get home, I talk to my husband a while, then change clothes, prepare his dinner and feed him, then answer my e-mail (the highlight of my days are my e-mails with my dear friends who keep me going and are there for me, even though they live in all parts of the nation and Canada!). I usually eat my meal at lunch and snack for my dinner. I give my husband his meds at 10 and go to bed after saying "good night - I love you" so that it is the last thing he hears each night.
There is nothing to say day by day, and others have been giving excellent advice, so while I still read here, I rarely write. I think you will understand if you reach this point.
Also, I want to add that I chose to have my husband remain at home and because I am blessed with 5 days of respite a month, I use them on a Mon-Fri, so I only have to pay for three weeks in-home day care a month. This makes it more bearable cost-wise. And my husband has always been an easy patient, with no anxiety or rage issues.
Most of my friends whose husbands are close to this point have had to place them, and I fully understand. My pocketbook makes that almost impossible for me. Believe me, I have considered it. Also, I have three friends here who are doing the same as me, except that they are retired and home 24/7 with their spouses. We stay in daily contact because of the fact that we have the same issues.
I truly don't think I would have made it this far without Joan's message boards and all of the friends and "family" I have made here over the years. I love all of you....
Dear Mary, my heart and thoughts are with you. I've just come through this waiting game with my husband, and you've described it exactly. The extra losses are staggering. If prayers and love will help keep you upright, you have all of mine.
mary i know how hard it is and what you are feeling. we all will have to face the end games as you say, and none of it will be easy. you have done a superb job friend.
(((((( Hugs)))))) Mary, you have been an inspiration for me and you have made this journey a little easier with your comments and advice. I feel like you are family and you are in my prayers every day. Love you...
Oh Mary, what you're going through is so heartbreaking. You, Sandi*, bluedaze and several others are such an inspiration to me. You've helped to prepare me for what's ahead. My DH is just entering stage 6 and I know the worst of this disease is yet to come. If we only knew when, for how long, and if the money we have will be enough.
Oh ((Mary)) how my heart is hurting for you…… I am not sure if it helps, but I do understand... Lynn hasn't been able to walk in over a year. Though he is bedridden, they do have this nifty chair that they have for him. They have a swing lift that they need to use to get him into it. But I do believe it has helped him to be up out of bed. I do PT and range of motions on him daily.
He has been on a puree only diet due to choking and swallowing issues since this past summer. I know the heartache of when they forget how to drink from a straw… each new loss of basic skills is heartbreaking, more than heartbreaking, soul crushing.
I think the only reason I am able to hold on is because of the times when Lynn is able to come out of the fog and express his love with words and actions. Mary, I am so very sorry that your husband isn’t able to show emotions at all anymore…. I just cant imagine …..
“There is nothing to say day by day, and others have been giving excellent advice, so while I still read here, I rarely write. I think you will understand if you reach this point.”
That is exactly how I was feeling when I wrote the do I belong here post….. I do understand Mary….. It did my heart good to hear from you. Much love my friend ♥
Mary, and all of you who have had to keep your loved ones at home <<<<hugs>>>. I read your posts and know that it will be my fate as well. I cannot afford to place my DH when the time comes as we do not qualify for Medicaid and can't afford the $7600/mo they want around here for care. He is in mid to late stage 6 and still looks good to outsiders but cannot hold a conversation, needs to be dressed and undressed, and has absolutely no clue from one minute to the next. I do have help come 2 days a week just so I can get out of the house. Your valiant efforts in caring for your spouses has given me hope that I will be able to do this until the end.
My DH is really getting on my nerves. Every time he cleans his glasses he uses a dry tissue, I tell him to use the spray, and everytime he says he doesn't have any, and everytime I get it for him in his bathroom. Then he asks if I want him to sweep the porch and I told him to do whatever he wants to do. He does this all the time "do I want him to do such and such". I wish he would just do whatever enters his mind and not want me to tell him yes or no. I know, I know it is the disease but it drives me nuts. I have enough trouble thinking for myself. As for TV, he will watch whatever I have on and when I change channels or the show ends he makes comments like he is glad it is over. He can watch ESPN until the cows come home and they keep showing the same stories over and over and over. Sometimes I wish he was further into this disease and I might be able to handle it better than I am handling it now. Sorry for the rant but the past two days have not been good.
Oh Jean, welcome to my world! My DH stands by our front door & every once in a while he will open the screen door & look out. It wouldn’t be a problem, except for the fact that our dog looks for every opportunity to run out the door & run around the neighborhood. Of course that happened this morning. I refuse to chase the dog cuz I know he will come back sooner or later, but DH wants to go out there & chase him. So I hand him the leash & tell him to go for it. He gets angry at me cuz he says I don’t care. I ended up having to go out anyway cuz there was another dog running around. We finally got our dog & now DH is sleeping in the chair exhausted by the whole incident. If it’s not one thing it’s another. I too have had a few bad days. I totally understand when you say you wish he was further into the disease because sometimes I do too.
Thanks Elaine, It is always nice to know I am not the only one wishing for my DH to be further into the disease. Sometimes I wonder how long I can go before I blow up! We are on our 4th year and DH hasn't a clue of how he is other than his lack of memory.
Jean, I have the identical problem..He will say " can I help you?" which is part of his normal personality. He was always one to try to help out..but he doesn't do it even if I say, could you empty the dishwasher. As to TV..the AMC channel is his favorite..he will see a movie start to finish and it will replay again and he will say he didn't see all of it... Get him to change his clothes? I have to remind him, take clothes away and set out new things..shower..have to remind him..now he is on a haircut kick..can't go today closed on Mon...so he demands to go tomorrow..somehow between his morning and afternoon appointments. It just never ends and like others, we won't qualify for aid and the nh fees here are high so looks like in time I will have to put up with outsiders in my house which, after experience with my parents during their illnesses, we suffered theft you could not imagine. I think when it gets to that point, I'll rent a climate controlled storage place and put all valuables there and lock other rooms with deadbolts. Today I am frustrated beyond description between DH and the cat which refuses to take her meds..know how to pill this strong little Tuxie beast but she is strong and fights and gets the pill out of her mouth. I told her today to just go ahead and keel over if that is her goal.
((phil)) I think many of us wish we could keep our loved ones at home. I know it has always been my greatest wish. Where he isn't combative and aggressive anymore, I have been thinking about bringing him back home. It is very selfish on my part, as he does believe he is home there and is very happy and content. It would be cruel on my part to take that from him, but I can't help it... I think about it all the time. The only thing keeping me from trying is all the medical issues he has and the special equipment he requires. The swing lift alone would break me. It is kinder, safer and better for him there, but Lord do I miss him!!
I never thought I would say this, but I guess it is a good thing we were/are broke so that Lynn did qualify for Medicaid. The nursing home he is in would be closer to 9000 a month. He and I both only have SS, mine disability, so there is obviously no way I could pay that! My heart goes out to those of you who feel their spouse needs to be placed but isn’t affordable. With everything one has to face with Alzheimer’s, we should not have the added financial burden as well.
"I never thought I would say this, but I guess it is a good thing we were/are broke so that Lynn did qualify for Medicaid. The nursing home he is in would be closer to 9000 a month. He and I both only have SS, mine disability, so there is obviously no way I could pay that! My heart goes out to those of you who feel their spouse needs to be placed but isn’t affordable. With everything one has to face with Alzheimer’s, we should not have the added financial burden as well."
We're in the same position you are financially. Just SS for both of us, DH get's a small VA. disability penision. Thanks goodness for Medicaid. I know I couldn't have taken care of him at home.
I want to thank all of you for your kind words and encouragement. I have always tried to look at the bright side of things, and smile and joke, but lately I'm finding it harder to do so. I refuse to let AD take me down. I'm fighting tooth and nail to keep being upbeat. I have good role models here at Joan's, and they are helping boost me up. Thank you!!!
And thank those of you who have e-mailed me for your kind words, thoughts and prayers. It means a lot.
I will continue to try to post and let you all know what might come. Today the caregiver had to call 911 because my husband was too weak to stand this morning, and sat down on the floor. He is not falling, it is just that his legs will no longer support him. Even Hospice called today to say that they are picking him up in an ambulance for my respite this month and bringing him back home in one at no cost to me. They don't feel comfortable using the wheelchair van any more.
Each of us do what we have to do to take care of our spouses. Each has different financial circumstances and the spouses react differently causing necessary meds and care, but we all are here for each other and give love, hugs, and support.
Mary you are a great inspiration to me. You have no idea how much your words mean. I feel that I too am upbeat and try to look on the bright side of things. My DH is 60. We bought the "Cadillac" of LTC insurance 6 years ago which should really really help when he has to be placed. I don't look forward to that day, but still wonder when it will come. Will i be ready? Will I know when HE is ready? This stupid disease just sucks.
Sheila, we are never really ready. Part of us always want to keep the spouse at home because we are convinced that we give better care than they would get elsewhere - and part of us knows that they will be better off in a nursing home/ALF where they will get professional care. Now as to when HE is ready - that is easy. HE is ready (or she) when YOU are no longer able to provide care for him/her at home. When you physically and emotionally are at the end of your road, that means you waited too long. So many here have said that they should have placed them sooner than they did. Never bother to try to discuss this with them. It is your decision.
It depends on how much help you have at home and the state of your financial situation. There is no right or wrong. It is when.
We do what we can for as long as we can (sometimes too long) and then "supervise" the care while others do the work.