Just a note of introduction My husband was diagnosed at age 57 with EOAD. He is 71 now and we are in year 14. According to the Fisher scale, he appears to be at Stage 6d. He is still at home but I am getting weary... Aricept and Namenda really helped and we had 9 pretty decent years. It's been downhill the past few years and appears to be speeding up, especially this past year. I shower, shave and dress him as he can no longer do it. He is still bowel continent but is in Depends for urinary. He still goes to the toilet if I keep him on a schedule but "leaks" and occasionally doesn't make it. His mobility is shaky but can walk short distances. He has no peripherial vision or distal perception. Eats mostly with hands but still has a good appetite. He sleeps very well- probably 18 hours a day, so I'm lucky in that regard. He still recognizes me most of the time but is beginning to forget other family members. Has zero short term memory and long term is going now too. I'm wondering how much longer I can handle this... I am 66 and in fairly good health, but have lots of "caregiver miles" on me. I retired 4.5 years ago to care for him full time as he can't be left alone now.
Hi Kay275. Welcome to the club. You pretty much described my husband. 56 at DX and now 61 yrs old. Only difference is that he is still continent...for now. I cannot believe you have been on this journey for 14 yrs. Bless you...no wonder you are worn out. Is it maybe time to think about placement? You cannot sacrifice yourself to this disease. Even if he is placed, he will still need you to be his advocate to ensure that he gets the best care possible. Please seek respite and think about taking care of YOU too!
Hi Kay 275, all I can say is God bless you for hanging in for this long. No one has a manual on how to negotiate this disease. Each caregiver must make the decision themselves as to how long one can handle it. I placed my husband 10 months ago primarily due to the emotional toll it was taking on me not so much the physical. I am glad I did. I am 67 and husband is 75 and has a lot of other health issues. If your husband us physically healthy and it sounds like he is then you may have a while. You r blessed if he sleeps 18 hours a day. Mine did not and I was trying to work from home. You need to do what you need to do to save yourself. I hope you are getting him into respite or having help in the home so you can get away. Respite was a great thing for me and it helped pave the way for placement.
About 6 months ago, I started using a sitter for a few hours. It had been 4 years with ZERO break. An emergency where I worked occurred and they asked me to help them train a new person. This is why I started with the sitter and it's been the best decision of my life. Even if I don't work, I try to get her for a few hours once a week. He does better in the mornings as he sleeps late. He is asleep when I leave. We worked and saved our money all of our lives. Don't have that much, and 2-3 years of private pay would wipe us out. Trying to hold out as long as I can but I have to balance finances and health.
No. And I've been to an Elder Attorney. I can keep my home (if I can afford upkeep, etc) but SC is not generous to spouses. The look back is a killer for our situation.
hi Kay and welcome. sounds like you are already a veteran here even if you are a new member. we are also in our 14th year and mine is also at home 7D stage. and in a very long holding pattern. respite is a must for everyone. take care and hope to see you posting often. divvi
You don't think he is to the point that Medicaid would kick in? I hear ya about the $$$. I cannot afford private pay either. I retired at 54 (I am an RN) because he needed someone with him. I am too young to draw anything yet. I keep my 2 grandsons to supplement his pension. Thank goodness he was a federal government employee so we do have health insurance and he has medicare due to his DX. He is also a veteran so that helps us also. I am in TN and we have 3 tiers of help available once they decline. My husband doesn't qualify for any of them yet. The goal is to keep them at home for as long as possible with assistance. Honestly, in TN, you have to be nearly dead to qualify for medicaid at the level of nursing home placement. Perhaps you could have him evaluated to see if any assistance is available to you at very low to no cost to you. Of course, I know that every state is different.
I had to go the Medicaid route. It is not fun but I have enough to live on and honestly for me it comes down to either give up the money and save myself or hold onto the money and go down the tubes emotionally and physically. I have a small condo which will soon be paid off and basically have no debt other than the house. I paid my funerals as part of the spend down. I will probably need a new car some time but not now and I trust that the good Lord will provide when the time comes. Medicaid was generous with me I am told as I am able to keep a chunk of his social security each month and it all helps. In retrospect I think the hardest thing about placing a spouse is the shear weight of the decision. No one can make the decision for you. In my opinion I believe that is why many people keep,them home longer than they should simply due to the weight of the decision.
OMG Divvi, your husband is 7D?? I pretty much assumed when we hit that last stage, I would probably have to place. How long has he been in Stage 7? I pray every night that The Lord will be merciful and take my husband before that final stage. It's hard for me now to manage just assisting him to get up and down. There is no way I could manage his entire weight. Back when he had frequent UTI's he would fall and I would have to call someone to help me get him up. Just a helpful hint on UTI's - I am giving him one tablespoon of Cystex Cranberry Complex daily and he hasn't had one in 6 weeks. He was having them every 2 weeks.... Barely staying off antibiotics, but the Cystex appears to be working.
Kay 275, don't forget the possibility of Hospice in the end stages. Some Hospices insist on a six-month prognosis, but some do not. DH is 89 and I'm 64…he is in the end stages but like the Timex watch just takes a lickin' and keeps on ticking'. Hospice has been a godsend, as he is adamantly against being placed. His Medicare pays 100% for Hospice at home.
kay I think we have been in stage 7 for about 4 years now. just like elizabeths timex still keeps tickin. we have hospice now and I have been told normally the end stage 7 moves rather quickly. not the norm here. declines are obvious and walking is nil now, but other than the obvious bed bound, hes happy and rather content, (praise be) - I have aides that come and help move and bath him now. hes got intermingled stages 7D/E now and its still a holding pattern. like we say release from this infernal disease should be a blessing but we are never ready for that to happen. (sigh) I cherish each day for as long as we have now just like everyone else here. I have tried the cystex but its a no go due to DH GERD issues - anything acidic irritates the gastric this more so than other - but thanks its a good idea if they can tolerate this!! divvi
Hi Kay 275. We are also in our 14th year. DH has been bedridden for 3 years and has had hospice for 3-1/2 years. It took me several tries to find a hospice that would take him, but has been a god-send for in-home help. I, too, was totally worn out. One thing, I can tell you, care has been considerably easier since he can no longer stand or walk. He appears to be very content and happy.
Thank you Denny for your perspective. My husband still walks although wobbly and not very far. Helping him up and down and in/out cars is quite a strain sometimes.
Welcome to my website. It sounds like you are already quite a veteran in this involuntary journey of ours. I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are also sections on EOAD, not only in the resource section, but on this message board. Go to the top of the page and click "search". Type in EOAD, making sure the topic circle is filled in, and click "search" again. All of the discussions on EOAD will come up.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
14 years - I can't imagine - my husband was diagnosed at 51 he is now 59 - he can not speak- is incontinent at night and gets very agitated all the time - he is afraid to go down stairs and has no peripheral vision - he is healthy In every other aspect - how much longer can this last - I can't do it much longer-
My husband is 66 and year 7. My sister-in-law lasted 9 years, died in July. My father-in-law lasted around 25 years - died in 2010. My MIL died in 2001 from a massive heart attack which I attribute to 'literally killing herself taking care of him' because she refused or did not want to pay for any help. I have no intentions of doing that if I can help it.
I'm with you on that one, Charlotte. My mother died 10 years ago Sunday when she stroked out during an angioplasty, and I have always attributed it to "literally killing herself taking care of Dad".
Its only been in the last year or so that I realized my father was showing signs of dementia at age 80, and he is 97 now. So Mom dealt with it for 7 years before she died because she did not want (or did not know how to ask for) help.
I saw signs of dementia in my DH as much as 10 years ago, although the symptoms have only been really noticeable over the last 4 years, and he wasn't officially diagnosed until 2012. But I don't know how much longer I can keep doing this.
We're in year 6 of this journey and other than his broken knee cap (and dementia of course), DH is in better health than I am. I've worked hard to keep him healthy and we do have help because DH has a LTC policy (so grateful for that). But I've begun wondering how much longer will this go on? I certainly don't want to lose him but the thought of this lasting 8 years or more is overwhelming.
My mother died suddenly of a massive heart attack and I'm sure it was due to the stress of living with my father.
LFL. I wonder the same thing. How long will this go on? It is year 6 but I noticed symptoms 2 years before that. He has been stable but has declined mentally in the year since I placed him. Can no longer make a coherent sentence and lost most peripheral vision. I know I am blessed because he is compliant with everything and I have had almost no issues with extreme agitation and other behaviors that I see described in other posts. He paces a lot because the aide tells me he does not know what to do with himself. He was always such a "doer" type person. In his mind he thinks he can still do things like read but he cannot. I read to him when I go. He enjoys that. I try not to think about how much longer because it depresses me. I am happy I placed him. The vigilance of having him home was destroying me.
Ya, at his recent physical with changing VA from Portland to Walla Walla, the doctor said he was in perfect health and I said 'except for his brain'. The look the doctor gave me was like saying 'we don't talk about that' or 'what does that matter"?
CO@ - never thought of the reason his need to walk is because he does not know what else to do. Other than his word search and watching TV, little things I sometimes ask him to do like picking up heavy things or reaching things that are too high for me, he has not much else to do.
We're 11 years from DW's diagnosis. She is 84 and I am 83. She is in much better health than I am (has mild high BP and mild diabetes, neither of which is causing any problem). She sleeps most of the time and eats well. She seems happy and is not under any stress. Thus I am sure she will outlive me, and our money!!!