Change in diagnosis: what to do now?

mrahope

Hello, friends,

I have benefitted from your wise advice in the past, so I venture to ask again.  My DH was first diagnosed with MCI in 2020.  He is now 84 yo and was just diagnosed as now having mild dementia.  

Thanks to your advice, our DPOA is in order.  We also have a will, although I'm guessing it may need to be changed so that if I pre-decease him the funds will go to someone to keep in trust for him.  

I am sort of feeling overwhelmed by both my emotions and by practical questions.  I wonder if now is the time to try and move to some sort of senior living?  Or just have caregivers at home?

These are common questions, I know.  Unique to our situation is the fact that DH was born in an overseas location and still has a large close family there.  This poses the question of whether he would rather be here or there.  They are a big enough group that many hands would be turned to caregiving.  But how would I manage without him?  And there would be no oversight from me.  I also worry that he may forget how to speak English, which is not his first language.  Does anyone here have experience with issues like these?

Sorry to be so scattered.  I am very, very sad, and yet I must do something to ease his way.  I'm just not sure what the first step is at the moment.  

I appreciate the chance to ask these questions.

Pat6177

Hi mrahope, you certainly are considering a lot of different options. My DH is early moderate. Though I have thought about senior living, we like our house and I’d like to stay here after he passes. My DH is generally compliant and things are working for now. I do have an in home care person once a week but DH doesn’t like anyone in the house and frankly, neither do I. This is individual but I urge you to think about it. You may feel that being in a place that offers independent living and assisted living and perhaps even memory care suits you just fine. You might be finding that maintaining a house is just too much work. 

I would be nervous about sending him overseas for his family to care for him. What if they don’t step up and take responsibility for him and he needs to move back to the US? As he travels along this dementia highway, his ability to cope with change will diminish. I would wonder if he might find it too much of a change already. When was the last time he went to visit his family? Have you brought up the topic of his family to get a sense of how he would feel about this option? Perhaps he would prefer to stay put with you.

What you end up doing will depend as much on what you are comfortable with as what your DH is comfortable doing. And then with dementia, we never know how things will change and need to be ready to adjust. Keep posting and let us know how the process is going.

mrahope

Thanks for your reply, Pat.  I am feeling a bit overwhelmed.  My former job was as a librarian at a community college for many years, so I am thinking it's time to put my research skills to use.

I was concerned about him going to his family because he talks about wanting to go there almost daily.  I know they would care for him, but if there were problems, it would be almost impossible for me to address them from here.  

jfkoc

Change in diagnosis is actually quite common. Please be certain that proper protocol was followed for the diagnosis of dementia.

Be certain to factor in costs when looking at your options as well as the progressio you are facing.

I was able to have my husband at home until he died. Luckily great caregivers came our way and I did not need them until the last year but it was frightfully expensive. He went from MCI>Parkinson's>Lewy Body dementia. Thankfully we also had a Dr who know the importance of getting as correct a diagosis as possible.

Based on what you have written, I would try to keep your husband in our country

Gig Harbor

Cost may be a consideration. Depending on what country his family lives in it might be much cheaper to place him in memory care there in case his family could not care for him until the end. If you like your house and would be comfortable living there alone you could try to keep him home as long as possible and place him only when his care becomes too much for you to handle. The problem with dementia is the speed at which it progresses. Next year at this time he might be just a little worse or he could be a 1000% worse. If you choose to keep home with you start looking at memory care facilities now while there is no pressure. You could also choose what senior complex you might choose to move into. It takes a lot of stress off of you when you know your plans that you will have available if you need to make a change. Good luck.

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Ed1937

I agree with what has already been said. Sending him to another country sounds like a high risk situation. He more than likely would progress further during the move, and it might prove to be disastrous. If he got there, and didn't recognize people, would they still want to be care giving?

Gig makes a point that it might be cheaper somewhere else. That's true. But would that be your biggest consideration? I think you should weigh your pros and cons. There is a lot to consider.

mrahope

Thanks again, all of you.  The more I think about it, the more I realize that I am the one he most likely needs, even though his family is devoted to him.  The move to another country might truly be difficult.  Guess "going home" might be a lot more of an adjustment for him than he really can realize.

I am also thinking that, while I like the city/area where I live, I love neither the house nor the neighborhood.  I guess it is time to think about memory care or assisted living.  And possibly some alternate type of housing for me.

I am a bit worried about the language issue, but realize that I speak his language well enough so that we won't lose complete communication if/when he forgets English.

I realized also that I never put him as my POA when we had that paperwork done last year, and now I'm really glad it is my son, not my spouse.

Many thanks for your insights.

dayn2nite2

His care should also be based on his insurance coverage.

Is he either a citizen or permanent resident and is he covered by a US-based insurer or Medicare?  If so, he needs to stay here.

Battlebuddy

   I agree with a lot being said, especially Victoria. Wanted to weigh in on a couple points including the language question. 

   My husband comes from a large Hispanic family. I moved him near them in his first year of diagnosis . I really thought that there were so many of them, they would surround us will love and support. It hasn’t happened. Most people have kept their distance. People can think they will be there but when confronted with the day to day struggle they back off. I worry that might happen to your husband. 

   On the language question, I also was worried about my husband reverting  to his first language of Spanish. I asked the neurologist about it, who was a Spanish speaker himself. He said that it was his experience that most bilingual patients loose both languages at about the same rate. This proved true with my husband. He doesn’t speak a lot but the words he has left are probably equally Spanish and English. That includes curse words in both languages that I never heard him use before diagnosis

   

ElaineD

Dear mrahope:  I WISH DH had an official diagnosis.  My kids told me that Dad was 'losing it' at least 6 years ago...so probably MCI.  I finally realized they were right.  Vascular Dementia runs in DH's family.  And DH is 83....so he started showing signs at about age 77, right on schedule for his family.

But DH has never had an 'official' diagnosis because he doesn't think he needs one.  "What good what it do when there's no treatment?" is his response when I bring up some sort of evaluation.

I can only say that things are getting worse.  We had a moderately complex situation with one of his prescriptions.  Since this is a new drugstore, he must be the one to talk to the pharmacist, not me.  I described in detail what he needed to say...and he started talking about a drugstore not involved AT ALL with the pharmacist.   I was dumbfounded.  I took the phone, told the pharmacist I was the wife authorized to speak for DH, and settled the issue.

But he is more and more unable to grasp even moderately complicated issues.  And his short term memory is completely gone.  

I know memory testing isn't absolutely necessary...but I wish he had a baseline test so I would be more comfortable.  

Any suggestions?

Elaine

I have talked with DH's primary care doctor several times about this...to NO AVAIL.  I know she has the basic pencil and paper 30 point test...but she won't even bring it up with him.

Ed1937

ElaineD wrote:

I have talked with DH's primary care doctor several times about this...to NO AVAIL.  I know she has the basic pencil and paper 30 point test...but she won't even bring it up with him.

Elaine, I told my wife that Medicare requires people of a certain age to have the MMSE. I told her I thought it was a bunch of crap, but I had to do it too. Doc knew what I was doing. I didn't mention this until she was in for a typical three month (for us) doctor visit. She never questioned that explanation, and she did the test. At the time it was 17/30.

mrahope

I really appreciate what you said, Battlebuddy re: languages (first and second) and in my case third and fourth as DH spoke a "mother's knee" language as a child, his official language throughout his K-12 schooling and first part of college, then English throughout our married life.  He subsequently learned French fairly fluently, as well as some Spanish and Arabic.  He really had/has a flair for it.  What your doc says makes sense.  In some ways language is language and losing it sucks, however many you speak.  

Iris L.

ElaineD wrote:

I know memory testing isn't absolutely necessary...but I wish he had a baseline test so I would be more comfortable.  

Any suggestions?

Elaine, have you heard of instrumental ADLs?  You can look at the list of activities and see where your DH falls yourself.  Then you might feel more comfortable.

Iris