Should I move my mom abroad? Considering dementia care decisions
I'm looking for perspectives from anyone who has:-Navigated major moves with a loved one in mid-to-advancing dementia-Dealt with the "physically healthy but cognitively declining" situation-Made difficult decisions about care location when the "right" answer isn't clear-Experience with how much familiar surroundings really matter as dementia progresses-Balanced their own grief and the needs of their immediate family with caregiving decisionsI know there's no perfect answer. I think I'm just looking to hear from others who've been in similar situations - what helped you decide? What do you wish you'd known? How did it turn out?Thank you for reading and for any wisdom you can share.
My situation:I'm in my mid-40s, caring for my 77-year-old mother who has dementia. My spouse (mid-50s) and I both came from multigenerational households and knew caregiving would likely be part of our future, but knowing it intellectually and living it are very different things. I have two siblings but mental health and addiction have not had them involved in caretaking.
**Background: Mom moved in with us a few years ago with what was diagnosed as mild cognitive impairment, but the progression has been steady and obvious. She currently attends adult day care 3x/week and is remarkably physically healthy - exercises 30 minutes three times weekly, handles stairs without issue, uses the stationary bike. On paper, she's doing great physically. She now has dementia diagnosis. I hold PoA and healthcare PoA for both my parents.
**The challenge: The cognitive decline is accelerating in ways that are hard to reconcile with her physical health. She sometimes doesn't recognize me, thinks she's visiting and will be going home soon (to cities where she hasn't lived in decades), believes her parents are still alive (they've been gone 20+ years). The back-and-forth between confusion and lucidity makes it so hard to know what's right going forward. I help her with dressing, bathing, and meal prep. She can still toilet on her own.
**The complicating factor: My parents are still married. My father (late 80s but remarkably spry - walks 5 miles daily) lives primarily in his home country where they built their retirement home in the 1970s. About 15 years ago, Mom decided she didn't want to move there, so Dad has been splitting his time between countries. I'm now considering moving Mom there to be with him - the cost of living is substantially lower, and we'd be able to arrange 24/7 nursing care and other support. Dad has been agreeable and is helping get things set up.
Dad hasn't always been the best with Mom's care in the past - overfeeding, not enough exercise - but I've let go of the idea of "perfection." With professional help in place, I'm hoping Mom's care will actually be better managed than my attempts to coach Dad from afar.
**My struggle: Logically, I think this move makes sense long-term. Dementia doesn't get easier, the care there would be comprehensive and more affordable, and my parents would be together. But Mom has stability here - familiar surroundings, her routine, my daily presence.There's also the question of what happens if Dad predeceases Mom. She'd be in a foreign country, though she would have professional care in place and extended family on my dad’s side. I could also still visit. With her declining cognition, it may not matter to her where she is at that point, but it's still something that weighs on me.
My husband has had more difficulty than he anticipated with having someone else in the house and our limited time together. It's taking more of a toll on him in various ways than either of us expected, though we've been communicative about it.
And then there's my own prolonged grief. I know the caregiving will only get harder, but I'm also just sad. I genuinely enjoy hanging out with my mom, and I'm mourning all the future times together we're going to miss. Watching her lose more of herself before my eyes is heartbreaking.
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That's the single problem I see here.
To me such a move is absolutely out of the question. I doubt her husband is ready to deal with her alone 24/7. Don't you? And if he tries, how long can he last. You already see where this is headed and it may head there very fast with such a move.
Unless there is a huge family support system in this other country I believe it is magical thinking that this might work in any way.
Now we come to reality. You took Mom into your home. She now needs pretty much 24/7 care and that will get worse. It is impacting your marriage. To me there is no question this isn't sustainable over time. You and hubby need to sit and discuss how long it is sustainable and what circumstances dictate a move to care. And then that move to care should take priority.
That's my thinking here, and I hope you will get a ton of input and hope that someone has better ideas for you to consider, but you elucidate this so remarkably well I honestly think that there isn't much you missing in terms of weighing options for the future.
I sure wish you best of luck and sure hope you'll update us as you go along.
PS, one thing more to consider in all this is that you describe your mom as being "back and forth". This is common for early stages of dementia, but what you need to grasp is that it will soon be a matter of there is no coming "back" and the dementia will be constant, and very troubling, with no respite or relief to anyone subjected to it in your home.
Making such a move is not realistic!
Much easier for Dad to come to her and spend time with her, while getting professional care.
And, if your mother has lived with you for 15 years because she didn't want to move with him to another country, Why on Earth would you make her do so now? That sounds so unfair to both of them. Your father may think he can take care of her, but as you say, "knowing it and living it are very different things"!
Your mother will not be safe much longer living with you or her husband. She needs the professional care and safe environment of a memory care facility. She will continue to decline and her needs will become increasingly complicated to manage. What will happen when she no longer recognizes her husband and begins to fight him, feeling fearful and threatened by him? What about when she falls and he tries to pick her up, hurting himself? What if she makes her way out the door and wanders away? If she turns on water and leaves it running, flooding the house? Or starts a fire because she doesn't remember how to operate the stove or microwave?
Please Reconsider this move! It will be so difficult for her, and for your father.
And you can't do it any more. It is time to place her in a care home where she will receive safe, competent care.
Here in the US no one can make decisions for another person legally without properly executed Power of Attorney documents (as you must know being her PoA). But, your PoA docs won't mean anything in another country, and now your Dad may not have any legal power to make decisions for her where he lives.
I also agree that your Dad is doing great until he isn't. You should think through some worst-case scenarios. I hope you are certain about the cost of care in the country you are moving to. I would also investigate the availability and cost of facility care, if any, in that country, as well as any social safetynet programs if BOTH of your parents go south at the same time. Do not assume your Dad's relatives will be overjoyed to take care of him or/and your Mom.
Make sure to know before you go.
If your dad passes away first, you can move your mother back here if necessary, but to a memory care or other suitable facility. Or even before your dad passes away, if it turns out the arrangements don't work out. Nothing is set in stone.
It may take your mom a few weeks but as long as the setup there is nice, she'll adjust. We here this argument all the time about "familiarity," but senior are always moving from home to IL, AL, and MC, and moving within facilities to different levels of care as their needs increase, and it works out fine. Just give it time.
Keep in mind that with your background with the practice and expectation of multigenerational living, you may have had some guilt ingrained into you that is entirely unnecessary.
Keep us posted on how the situation progresses.
1) What does Dad think about this? Is he willing to pick up a lot more caring, a lot less privacy, and probably fewer other activities? It will be a big change from the way he lives now.
2) M’s physical health seems good. How long is she likely to stay like this? How long do the doctors expect her to live – 5 years or 20 years?
3) DH is finding this more difficult than you expected right now. If M stays with you long term, it is the end of your marriage as DH expected it. What will this mean to him and to you?
4) Wherever M lives, she will soon have “stability - familiar surroundings, her routine”. How will M cope with D’s “daily presence” rather than yours?
5) You will miss ‘hanging out with her’ when things are going well. How would you cope as she deteriorates? Is a facility here different from a facility in the other country?
My guess is that this is so complicated that no-one else’s experience is likely to help much. And the future (like what if D dies first) is too hard to guess. One advantage is that M is not now in care, so it’s easier for all of you to try the experiment of her going for a few months. What do you all think about that?
1) Dad is supportive of the move; it was the original plan for them to live out their retirement together. He would be hiring caretakers for my mother that would work in shifts. They designed the house for aging in place, so it’s all one level, rooms with adjoining bathroom and grab bars, no carpets, etc.
2) I wish I had a crystal ball, but strong physicality runs in the family. I haven’t known any aged family members to use a cane or wheelchair. I had grandparents and aunts live well into their 90s, all walking to the end.
3) Yeah, the toll on DH is difficult and another reason why I’m looking into alternative solution that’s not here with us. Thankfully, we are working on some solutions.
4) I’m not sure how mom will cope with new presence, but over the past 5 years, my father has come here for a few months and been with mom as her main caretaker to give me short-term respite, and does well. They also do web calls every day. As another poster stated, I can do web calls with mom. I think soon she will not know where she is or exactly who we are, based on my observations.
5) Well-said…coping later will be even more challenging. I would say the top facilities there are like middle of the road facilities here, but we would be looking at in-home care. I would be ok if my mom ended up needing to go to a facility there, if it came to it. I still hope to visit some of them in the near future.
It is a complicated situation, and the feedback has been helpful, even though folks may not have experienced this exactly, some may have seen the dementia progression more fully than I have, so I appreciate the feedback and yes, much of this very well may be an experiment/trial and error.
It was SO WONDERFUL!!!! It was a great change of scenery, we improvised and adjusted to whatever my father needed.
He had top of the line winter clothing , boots, hats, scarves, and ramps for the wheelchair that was eventually needed.
We went to parks, restaurants, movies, etc… tons of new and fun things to do together.
I believe if you and your husband make a plan to try and visit as regularly as possible, that it can be a great opportunity for your mom. The more affordable help for her and your Dad is really going to help. Planned visits, with fun things to do, will help everyone. Exercise, good diet, low stress, and fun activities/socializing will really help your Mom.
Best of luck to your family
🙏❤️🍀