Too old for this/too young for this
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Welcome. Sorry about your spouses’s diagnosis. He’s not in denial. He has Anosognosia—When People Don’t Realize They’re Impaired. He can’t understand he has dementia. Sadly there is no treatment. It’s a progressive disease. If it’s early onset there may be trials but there are side effects and it doesn’t sound like he would agree to that anyway. The trials may delay progression by a few months at most. Learn all you can about the disease so you can help him. Read the book “The 36 Hour Day” which was recommended by a nurse. Search online for dementia caregiving videos. Tam Cummings and Teepa Snow have good ones. Get your legal affairs in order. Meet with an Elder Care Attorney right away. You will need DPOA, Medical POA and HIPPA forms. Just tell him you’re getting yours done and take him with you. Do not tell him it’s because of his diagnosis. Here’s a chart of the 7 stages of dementia that lists behaviors. Some behaviors may show up later in a different stage but it will give you a general idea. This forum is the best place for help and support.
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I’m so very new to all of this and especially this site. On top of everything all these abbreviations on this site are confusing and distracting. Our doc also said she doesn’t like to discuss stages? Is this normal? Who knows. It’s early days and I can honestly say I’m already ready to throw in the towel. Spouse is stubborn and arrogant in denial not in denial because he doesn’t see he is sick. He just prefers to hide from problems. Just normal for him. And the amount of decline that has happened recently is frightening. We all noticed things beginning to change within the past couple years. Except for spouse of course. But in 6 months, quite a lot. Not promising
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All I can say is sorry you have to be here on this sight but glad you found it. This site has really helped me and my wife with early onset Alzheimer’s get through each day. It’s not easy but everyone is here to help you navigate your journey. Remember that it is not your husband acting out but this terrible disease. Also please take the advice from SDianeL especially the legal and health DPOA and POA. It’s well worth seeking out an elder care attorney to help you with the paperwork. Keep asking for advice in the future and we will do our best to help. You are not on your own here. ❤️
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Just a few thoughts. When my wife was diagnosed over 9 years ago the treatment they prescribed was a medication (Donepezil). We were told that it helps some people for a while. I couldn't tell if it made any difference, and I know they have come up with other medications since then, but all any of them can do is slow things down for a while, and from what I have heard a lot of the newer ones can also have some bad side effects. After my wifes diagnoses we talked about it once or twice but after that I never used the words Alzheimers or dementia. We did acknowledge that her memory was not very good and anything else I just "volunteered" to do or help do the things I could tell were difficult for her. Most doctors seem to be very reluctant to try and talk about stages, I think they know that in a few office visits they can't really give a fair assessment of the stage and they don't want to say something that might come back on them. I have been on this site for over a year and I still don't know all the abbreviations but there is a list of the common ones in the upper right corner of this page. I don't post a lot but there are a lot of people here that have good information so keep coming back. Also make sure you have a DPOA durable power of attorney and other legal documents.
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Welcome and so terribly sorry you have to join our club.
In my experience with my DW and her early onset dementia, the "slowing the dementia progress" drug my DW was put on (Galatamine) did very little, if anything at all. Her progression has been rapid and there's no way to know if it would have been more rapid without it.
The folks above are correct, get your legal stuff in order with a certified elder attorney, find yourself a good geriatric psychologist, check out Tam Cummings DBAT for descriptions of the various stages and hang the heck in there. We're here when you need us.
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OMG you sound just like I did when my significant other first announced he was experiencing memory issues.
I hahad been over 2 years now and I have learned a lot. That is the BEST thing you can do for yourself and for your partner.
I am trying to refrain from using the abbreviations here to help you as well. Research and educate yourself. I purchased a couple of books to read and I started journaling for myself to keep a record and also as a form of release for myself.
I also felt at first that my partner was in denial, but it is not that, it is a brain disease, he is ill. He is not on any medication other than normal B complex supplement and some L-carnitine and choline & inositol. He still works part time. We are retired and full time RVers. We work host at RV parks in the summer months and relax in the winter months. I promised him that I would take care of him and not force him to doctors and I am honoring that promise. I have noticed a gradual decline the past two years, the biggest being that we no longer can have wonderful conversations like we used to.
I have learned that most importantly I need to take care of myself emotionally and physically otherwise I can not take care of him. I have a caregiver support group in our winter location but NOTHING in our summer location. I find it is important to have "me" time even if it is an hour in the evening alone watching what I want on TV.
I have watched so many You Tube videos and they have helped, this is a journey I would not wish on anyone but it "is what it is" and I am doing the best that I can. Some days good some days need improvement for sure.
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@SpiralStylz
Hi and welcome. I am sorry for your reason to be here but pleased you found this place.
It's very likely what you are calling denial is anosognosia. This is when a PWD cannot recognize the degree and impact of their cognitive shift. In his mind, he's fine so why would he take medication for a condition he doesn't have?
The medications that exist fall into 2 classes. The oral meds are meant to help a PWD function better day-to-day. They do not stop or slow the disease process in any way. They are not universally tolerated by and for those who can take them, they only seem to work for some. The infusions are designed to extend the earlier phase of the disease for months; they do not slow the disease progression of extend life expectancy. Further, these meds require extensive testing to qualify, are infused every other week, have some scary potential side effects and are very expensive.
My dad had mixed dementia. One was related to a Thiamine deficiency caused by alcohol use disorder, and he did improve for a time with treatment so long as he was abstinent. We did not use any of the oral medications available as his doctor didn't think he was a good candidate. We did use some psychoactive medications for mood and agitation when that became an issue.
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For myself, living day to day with DW ALZ, anosognosia vs denial is a distinction without a difference. I imagine there are some people for whom this difference was meaningful, but I never found it to be of any use.
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So sorry about the diagnosis and the panic… It is a hard road to walk for sure.
Treatments: There is no cure. Another poster talked about infusions. My loved one with dementia has taken Donepezil/Aricept. Did it help? Who knows? The disease is progressing; maybe it would have happened faster without it, maybe not. He has not had side effects, so it seemed OK to try.
On stages: There are different staging tools. In a YouTube video a geropsychologist describes some variants. I found this informative:
And on use of acronyms: I agree it is off-putting, especially at first, but it does make typing quicker. Here is the list of the most often used ones:1 -
Why doctors don't like to cite stages is a mystery to me, but that seems to be the case with all doctors we dealt with.
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I don’t mean to be nosy and I have no clue what to expect and in a life full of up downs lows and highs this is a curveball from planet 9 you say 9 years ago with your wifes diagnosis. Like what’s up with her now? Hubby wants to retire. Then move on to another company. Keeps making these plans and I’m sitting here at a loss not knowing what the heck I’m supposed to do. It’s just overpowering and overwhelming
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Keep in mind that every PWD follows a different timeline. You can learn what might be ahead, but not when you might see it.
Others here know more about this than I do, but if your DH is still working, you might want to get him to retire before he does something that gets him fired and loses his pension (if he is eligible). He might also qualify for Social Security Disability Insurance.
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I'm so sorry that you are going through this struggle. I've been through it. Others have given very good advice.....Read the book The 36 hour Day. It was the toughest, scariest book I've ever read but such necessary advice for YOUR survival. Very important info.
The other perfect advice is to watch youtube videos. Teepa Snow is WONDERFUL!
The first year was the most difficult because he was obviously impaired enough to not be normal, but normal enough to not want to cooperate with the advice of doctors.
My husband was 68 when officially diagnosed with vascular dementia. We had noticed he was losing his ability for logic about a year before that. We are 13 years apart in age and I'm thankful for that because I was young and energetic enough to do the tough stuff that maybe an older person might not be able to.
Learning from the people in this discussion group is very very helpful. I like it better that in person meetings for caregivers because I could access the info, ask questions any time of night or day!! Plus, I'm much more of an introvert and didn't like being with people! LOL! I also have trouble trusting strangers in person!
Keep in touch!2 -
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My wife is 72 and was very early stage when she was diagnoses. She still drove for about 3 or 4 years, but that was too long, she had a couple of small accidents before she quit. She has not been able to control her own medications for about 5 years and has not done any cooking in 3 years. She has been in MC for about 18 months. I was looking at MC when she had a stroke. The stroke made the move happen a little quicker but I was already preparing for it. She can now only get up and walk a short distance with help. She has no interest in anything. She likes company and can communicate but can have any kind of conversation. She can' decide between two things "do you want carrots or potatoes" "I don't know". That is her story there are people here that have seen things happen much faster and much slower.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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