Last year at this time my H was in such a physical state that he could barely move. I had to help him off the couch and out of chairs and to the bathroom. I even called hospice. I know that I have mentioned this before but I have been thinking about others that have had the same experience here. Their H has had a period of time when they felt better. My question is, does this happen to everyone? How common is this and does it happen more than once before it is over? I just don't like this roller coaster! Am I going to lose my husband to Alzheimer's or not!!!!!! I have emotionally divorced him a long time ago but I am still stuck in this...whatever this is.
I wish I knew Deb or had an answer for you. Each and every Alz patient is different and i have learned that what happens to one person does not necessarily mean it will happen to my husband. I hate the roller coaster also. My husband has had a slow decline and I have never seen an upward trend for him. As to whether we will lose them to Alz is totallyup to God. I am at the point where I am starting the placement process and Medicaid approval. It has taken me sweat, blood, lots of tears and prayer to get to this point but I feel that keeping him home longer (even tho I probably could) will not help either one of us. I feel he is not getting enough stimulation--mental and physical--and I feel he will get more of that in assisted living. I too have emotionally divorced him years ago. All I know is you have to keep moving forward--whatever forward is for you. For me it is placement. We must take care of them but we must take care of ourselves.
I wish I knew what came next. My DH has been in a fast decline the last three months. He no longer can shower by himself and has trouble understanding me telling him what to do. He is 74 and it has been 8 years since he was diagnosed and had problems before that. I am afraid assisted living would not be enough for him. He would need constant assistance. His care is wearing me down, but I worry about what would happen to him if he was placed.He goes to day care 3 days a week, but with the holiday and bad weather he was only there one day this week.
maryd, please, regard what so many others including myself have done. You said his care is wearing you down, and look what happened to me, 6 weeks of pneumonia from ultimate stress. Please check you options, let us know if there is anything we can help you with, and truly, how ok will he be if you get sick?
deb426567 this is a raw honest statement. Though my husband has had a very fast decline, barely two years from diagnosis to placement, he cannot even walk, when I watched the stages when he was home, I was so unsure if I was just imagining things. At times I just wanted it to HURRY UP I CANNOT DO THIS YEAR AFTER YEAR AFTER YEAR. As sad as our journey is, this slow moving one must be SO HARD. I don't know what to say, but make sure you do not get sick too, or too down. Big hugs to you.
Deb - You told us what DH was like a year ago--what is he like today? How old is he? Some do have periods of being 'normal' that usually lasts for a short time -- days. But, one way or another, yes, AD is terminal, you will lose him and no one can say when. My DH lasted 10 yrs after dx, but he certainly had it long before then, I know of some who lasted for 20+ years and others for just a few yrs. There's a certain progress to it all, but how each person reacts and responds is in their own way. And, yes, it is a roller coaster on a giant yo-yo.
You are sounding pretty stressed -- that's to be expected, everyone here has been in your shoes. Is any help available? I always hate to say this, but you have to take care of yourself, your life and well-being are just as important as his-- and I know when I say that, many caregivers want to shout, 'yeah, that's easy for you to say.' Try to get some respite - even a day away, a few hours to pamper yourself, hair & nails, a long nap, a massage, whatever will really help, and I know from personal experience how hard that is to get. I had adult children who could give me that, but just here and there, they have their own lives, but when they gave me a few hours--and once a whole week-end it did wonders. I hope you can find that. Anyway, what you are expressing is what others here have gone thru, so keep posting, let it out to this board, we'll understand.
Deb I understand exactly what you are talking about, my dh was very bad also about 8 months ago, now he is much better, and I wonder everyday how long this will last. I wake everyday wondering what the day will bring.I am just trying to enjoy the better days and prepare for whatever might come next.
Bettyhere, my DH is 74 going to be 75 in 2 months. He was dx in 2009 but we all(dr. included) think he has had it since at least 2000. Mentally he is, right now, pretty bad. Not every day but most every day he can't even put a sentence together. It is worse with me than it is with others but I learned here that they can "pull it off" for short periods of time with other people. He spends most of his days locked in his bedroom and he roams at night so I stay up all night and try to sleep during the day when he is calm either watching tv or in his room. Most things he doesn't understand but he can still dress himself but he doesn't change clothes. He can still shower as far as I know but he won't do it. He can still shave with his electric razor but he doesn't do a very good job. He can still walk but he hugs the walls and he looks down at the floor and is very slow at it. He still eats but not much at all, probably 500 calories a day including the ensure. I wonder how long he can go with eating like that. He eats a lot of sweets, he will eat molasses right out of the bottle. YUCK!!!! His "improvement" if you can call it that has lasted almost a year. It has been surprising to me but because I have emotionally divorced myself from him I really can't enjoy it because I know that he is going to get worse again and I can't deal with the rollercoaster.
I had a friend that took me out on a regular basis but her husband put an end to it because he got mad about us spending so much time together and she stopped to keep the peace, I guess. Anyway, I lost my biggest respite. I am doing things for myself, I still do my nails but I just go by myself and have to leave my H by himself. I can still do that for short periods of time(a couple of hours at most) but I am taking a chance in doing that. I don't even have a car that I can escape to or go somewhere, I walk! Good thing about that is I have lost a lot of weight! :)
Anyway, this is going to continue to be the hardest thing I have ever done and will probably ever have to do. He was never a really good husband but now he is, of course, even worse. If I believe the fact that he has had this since 2000 that would explain why because we got married in 1996. That didn't give us much of a marriage.:(
In December my dh went down like the Titanic, I was mentally writing his eulogy. He had a blockage, probably caused by me trying to control his bowel incontinence, and, as it turns out, his chronic kidney disease went from Stage 1 to Stage 3 in 2 months. He could barely walk, his cognition all but vanished, he was in lots of pain, wouldn't eat because he was in so much pain. I got the blockage cleared and got him an RX to stimulate his appetite, and voila, he's bounced right back. I think this is probably different than what you others have experienced because my dh was so stressed with the other conditions and when they cleared he got much better. It did give me a snapshot of what to expect when he does start a rapid decline, though. My dh is very sweet and that makes it much easier to care for him. There was a time when he wasn't and with the help of all of you here, I learned what medications to get him on and that improved the quality of both of our lives immeasurably.
Everyone tells you to take care of yourself, go someplace by yourself and decompress, etc. That is so much easier said than done. I do manage to get away for the whole day when the housekeeper comes. She's been coming for over a year now and dh loves her. It was always the plan for her to bond with him and become his alternate caregiver one day. In the meantime, it gives me 2 full days/month away without any stress about him at all, I know he is well cared for and having a wonderful time. I'd love to get away for a week or 2, but that's only dreaming. But, the 2 days keeps me happy. I know these good days will soon pass and this journey will become much more difficult.
mothert, I am glad that you were able to take care of your DH's decline and I am even more glad that your husband is very sweet! That is very important! I would love to get away for a whole day. I am so glad that you can do that, maybe someday... I agree that you definitely got a snapshot of what will be to come because that is how I feel about last year. I was just confused and still am a little about how that could happen, it was so weird!
I surely hope that you can find a way to get in some help or to place your dh because it so important to get that break for yourself. Before I found our little housekeeper/caregiver, I was not a happy camper - pretty darn depressed, I think. As soon as I got dh's drugs sorted out and brought Katie on board, I've been more able to handle the situation. There were times when my husband was so difficult, when he used to drink and get aggressive, I almost hated him and wanted him soooo out of my life as soon as possible. It's a terrible fix for us to be in, we can't walk away from an abusive husband because he has dementia, we're stuck in Hell with no way out. With your husband's up and down swings you must be exhausted both physically and emotionally. I am so sorry! I will keep you in my prayers.
Thank you mother, I appreciate every ones help! I had one person here say that they were thinking of me and praying for me and I told them thankyou, I can use all the help I can get and he said I wish I could do more and I told him you are already doing all you can. I am exhausted and I wake up every morning hoping this is the last day I have to do all of this. All I can say is that one day it will be...