I just had to ask how much time he has left

tboard · October 2

My husband's doctor has been strongly suggesting that I put my husband in memory care. There are days when that option seems attractive but it is unaffordable. I asked the doctor how long he thinks my DH will live. I was shocked when he said "about a year". DH has mixed dementia, Alzhiemer's and Vascular dementia. He is still ambulatory. He talks but doesn't make a lot of sense.

I haven't told our adult children or anyone about this. I guess I am still processing. DH was in the room but I am sure he doesn't understand.

We have been through hell with his dementia, yet I can not imagine a life without him. We have been married for 46 years. I won't mind being able to sleep when I need to and I won't miss being screamed at and verbally abused as I clean him up.

I can not picture myself living alone. I cannot even imagine it. I feel lost.

The doctor is just taking an educated guess.

There were some test results that came back as abnormal from that appointment and the doctor said that we will address it next year if it gets worse. Does he mean that it doesn't matter because my DH isn't going to live long?

Maybe I should not have asked. Maybe the doctor is wrong. I doubt I will share this with the family. Yet I am telling them that they need to prepare themselves because we won't live forever.

Do you want to know how long your spouse with dementia will live?

BikingOldMan · October 2

My heart aches for you and your family. I'm not big on giving advice, however, I am breaking my rules with this post. Within the last 3 years I have had to deal with my 53 year old daughter's worsening health and death as the result of ovarian cancer. Within that time frame My DW and I got the diagnosis of her dementia as an ALZ dementia. No longer MCI. The consistent advice coming to me at that time was "You need to get help!" — That is advice #1 I want to pass on to you!

You mention that you have not told your adult children. Advice #2 — I strongely recommend (with love) that no matter the existing relationships with them that you get them involved sooner rather than later! In person if at all possible. If they are close by arrange a meeting. Ask them for help! They are not living with the situation that you are. IMHO they need to know your feelings. "Feelings are neither right nor wrong, they just are." is a phrase that has helped me over and over in the past 50 years or so. Again, IMO, it's a family affair whether you want it to be or not.

harshedbuzz · October 2

I'm not a spouse, but I absolutely wanted a rough idea. Dad's doctors wouldn't provide a timeline. His diagnosing neurologist said he could live with dementia "10, 15 or even 20 years"). I did a lit search on the topic, factored in when I saw the first symptoms, his mixed-dementia diagnosis (Alz and WKS) and came up with a guess that turned out to be quite accurate.

I'm a planner by nature about my parents' assets being used up on dad (whose dementia was alcohol-related plus Alz) leaving mom (who will likely need care at some point) without the funds needed to buy into a nicer facility before converting to Medicaid.

HB

ETA: Given the terminal nature of the diagnosis, testing is something you may wish to reconsider. The thing to ask yourself it "what are we going to do with this information?" If he's progressed to the degree you need to clean him up and the doctor feels he's a candidate for a MCF, it may be time to stop routine diagnostic testing and focus on comfort and mood.

When dad went to MC in stage 6, his doctor moved to a more palliative approach stopping his BP, statin and metformin. The first because he no longer needed it and the latter 2 because the benefits no longer outweighed the side effects.

Even with my soon to be 88-year-old mom who does not have dementia, her PCP is less aggressive around certain kinds of testing.

HB

tboard · October 2

https://alzconnected.org/discussion/74264/i-just-had-to-ask-how-much-time-he-has-left

https://alzconnected.org/discussion/comment/255105#Comment_255105

My children are very involved and they sit with him so that I can run errands etc. I am not doing this alone.

BikingOldMan · October 2

Am very glad to hear that!

Quilting brings calm · October 2

Have you called for a hospice evaluation? I suggest that you do as it will get you extra help - which will be valuable since you can’t afford memory care.

Keep in mind that it’s really impossible to predict how long the later stages will last without there being underlying health issues. However - the doctor probably sees no need to do further follow up on those test results because 1) whatever they show isn’t an immediate concern - maybe there’s no need for treatment for anyone unless the tests results get worse, or 2). Whatever the treatment is, your spouse wouldn’t be able to tolerate. You know that people here often which there was an off chance ramp so that their loved one doesn’t have to suffer in stage 7 for what can be years.

tboard · October 2

Never thought of a hospice evaluation. Thanks. I'll look into that. It is my understanding that late stage for people with vascular dementia doesn't last as long as late stage Alzheimer's. Of course, you are right we never know how long someone will live, which is why it is hard for me to believe he could be gone in a year.

Lgb35 · October 3

I would discuss this information with your adult children. I keep mine in the loop about DH. Sometimes it feels like a doom and gloom conversation which I hate but I don’t want them to ever feel like I didn’t keep them informed and allow them the opportunity to be with their dad. As a person having a parent go through terminal illness, adult children want to help. They can stay with him while you get out or so you can take a nap. Maybe they can bring dinner or help with house cleaning. You are not alone and allowing or asking for help is not a sign of weakness❤️

I just had to ask how much time he has left

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