Trying to figure out what I need to know and how best to help my in-laws

SamDanae

Hello all. My MIL was recently diagnosed w/ vascular dementia; her behaviors have moved into stage 4. My FIL is her primary caregiver. They moved to our state 16 months ago so as to have family nearby. I barely knew them before that time but have since then become very involved (frequent visiting, keeping records, attending doctors appointments, etc.). My husband is comfortable in his decision to not be very involved, but they definitely need help and there is no other family closer than 1,000 miles - so I became involved.

But, I am struggling to know how to help people who can't, or don't necessarily want to, help themselves. My MIL's quality of life is very poor and she resists suggestions/encouragement to do things that could help (she eats very little and what she does eat is often not good for her e.g., popcorn and candy; she doesn't want to participate in activities taking place at their retirement community; she refuses PT/OT; insists she doesn't have a hearing loss and that she doesn't need the hearing aids she got a few years ago). FIL asks her to do things but when she refuses it ends there. They do not have a computer or smart phone so I am their source for all things computer related (researching, ordering things online, etc.).

I have so many concerns and questions but its hard to know what I should focus on first.

My husband says I shouldn't be doing so much for them and adding such stress to my life. Is it possible maybe I am trying to take on to much?

I am sorry for the overly long post.

M1

Not overly long; welcome to the forum. Yes, on reading, my first thought is that your expectations are not realistic. Your MIL has a terminal disease. It doesn't matter what she eats or not, it doesn't matter if she doesn't exercise or do PT/OT. It doesn't matter if she doesn't want to socialize or participate in activities. I'd let her be, for the most part. I'm glad they are in a retirement community, it probably helps your FIL to some degree. My question would be, is this a community where they can age in place? Is there assisted living and/or memory care available for her when her day to day caregiving becomes too much for your FIL? His being overwhelmed would be my primary concern, and it could be that others in the community shun her (and him) because of the dementia. If additional supports are not there, it's not too soon to start looking around at other places, depending on what they can afford.

You are more than kind for wanting to help. Is your FIL able to adequately express his concerns? IF so, you might start by asking him what he thinks they need and what HIS concerns and worries are, since he is the primary caregiver, and take your lead from him.

If you read a lot of threads you will learn a lot. You have come to a good place for advice and support.

Quilting brings calm

Who does your husband expect to take care of them since he doesn’t plan to? Does he have any understanding what the future holds for his parents? Do your in-laws have power of attorneys in place so that things can be handled when they cannot do them- which would be now for your MIL?

harshedbuzz

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

Yours is not an overly long post at all. In fact, I suspect there's some sort of backstory that's been left out. When the in-laws moved "to be near family" was family consulted? Are there other siblings who might be more suited to caregiving? Or was your DH selected as the oldest, the boy or because you live in a place they deem desirable? Did your DH encourage them to move closer to avoid having to make trips to where they lived prior? (FTR, that was me. Those drop-everything-flights to FL weren't sustainable for me) Were there frank discussions around expectations and how each individual was defining "help"?

I can't say your husband opting out of caregiving is atypical. Is there some reason he doesn't feel compelled to help more? Does he not agree that they need a significant level of support either because he's in denial or does he recognize the need but not feel obligated to provide it? (This was something of a thorn in my marriage as my parents had been amazing grandparents to my sister's kids and moved away when DS was 6 only to return when, as my DH put it, "they need their butts wiped". He wasn't wrong) Is the actual interaction with the in-laws the source of stress or is it the things you should be doing but can't or is the situation causing stress in your relationship with your husband?

Do you find yourself frustrated with MIL's care? Could FIL be having his own cognitive shift that isn't as obvious compared to his wife? There are men of a certain generation who just don't seem to have the caregiver gene and seemingly can't step-up when needed. Often, they will try to delegate anything hands-on to a DD while maintaining control of decision-making and financial assets that could be used to pay professionals to provide the same. Is this where you are? Wanting all of the "best practices" to improve quality-of-life for MIL while FIL ignores you? IMO, like M1 mentioned, forcing socialization, engagement, therapy and a healthy diet on an apathetic PWD is not really going to change anything even in the short term. You might be able to reduce the stress and frustration by lowering your expectations for them both.

Is the retirement community a CCRC where they can level-up care as needed? That could be a great fit. Senior communities can be quite isolating for people (or couples) with dementia. There's one near me that even screens new residents with cognitive testing before contracts are signed to limit care to PWD to those who have been longtime residents. I found my aunt with dementia struggled in AL as she couldn't keep up with the conversations and activities of the other ladies. She was shunned and even bullied. My own mom lives in a 55+ community. She was 80 when I moved her there and has not really connected with anyone in 7 years. Most of the new residents are considerably younger and it's like she's invisible to them.

HB

JDancer

I see not having a computer or cell phone as a positive. There're a lot of scams online.

SDianeL

please read the book “The 36 Hour Day” which will help understand the disease, stages and tips. You can’t reason with her. She’s beyond that capability. If she’s in assisted living she will soon need to be transferred to memory care for more care and security issues. That is something you can start researching and speak to her family about.

SamDanae

Thank you all for commenting so quickly! I am amazed at how many thought provoking questions and insights there are. I quite literally feel as if a huge burden has been lifted just knowing I now have people to communicate with and to see a number of you validate that I am likely beating my head against the wrong wall :)

A few days ago I ordered five books (after reading through suggestions on another thread on this site). SDiane, "The 36 Hour Day" is one of those ordered. Thus far I have only received Thoughtful Dementia Care: Understanding the Dementia Experience and I began reading it last night. I have only read the introductory chapter and beginning of next chapter and am already blown away by what I don't know, what I learned in just those few pages, and began to understand some of what you all are saying. When I first spoke with my FIL about the dementia diagnosis he indicated he would be willing to read about it so I will be sharing the books with him also.

They live in 55+ community that provides for a number of things including all dining (meals [delivered to apartment if requested], snacks); housecleaning; emergency alert system (each person given an alert button to wear); 24 hr on-site concierge; valet service; transportation within 10 miles; and a calendar full of activities of which they can attend none or all. While the facility does not have assisted living or memory care areas, it was designed (such as handrails throughout, wide hallways and doorways, grab bars in bathrooms) to allow people to age in place by contracting with outside services for any in-home care needed (while you can contract with any service, they have close relationships with a number of businesses [such as OT/PT; companion and personal care] who have offices in the facility). It seemed such a wonderful place a couple years ago when we didn't realize MIL had dementia. Luckily (very luckily) they are financially well off so could contract for services without any financial hardship. But I suspect as we learn more about dementia we will find that at some point relocating her or both of them will be in their best interests.

To answer a few other questions:

My FIL is a reserved person and generally not one to express his feelings to anyone (except when he's angry about something). However, I have found that he is willing to share his thoughts or concerns if I initiate the conversation. And yes, him becoming overwhelmed is a big concern of mine. I will continue to talk with him frequently about what he thinks and needs. I will give him the books I've ordered (after I've read them). I've located close-by caregiver support groups, including one for men only, and will give him that info for if/when he might want that (I will be attending those even if he does not).

Legal documents are in place. But we are not quite sure how they should be used and when (legal stuff is definitely on our "lots of questions" list).

My husband's thinking is a bit of a mystery at the moment. He somewhat feels that if they "choose" to live the way they are than that's on them. It is already clearer to me he has no understanding of dementia and what it means for both his father and his step-mom, so educating him will be a goal of mine.

Other family involvement: my husband has five siblings. None of them are close with their father. One lives in FL and is mostly out of the picture. The other four live in central and northern California. Once FIL/MIL agreed that being near family would be best, only my husband and one of his sisters were actively involved in conversations and researching possible facilities (the rest just said "keep us posted"). Because of everyone's location, CA and OH were his two choices. FIL retired from CA and hates what it has become. Because of that and because OH facilities were cheaper than the CA ones, they chose to come here.

Now this is truly a long post so I will stop here. Thank you to all of you again for sharing your thoughts and advice.

jfkoc

You get a gold star for stepping up. That said…..I would start by reading everything on the Alzheimer's site. You will want to pay special attention to the legal and financial areas. You say legal thins are in place. You need to read the POA and be certain it is a Durable POA. YOu need to understand every thing it says.

Financial matters? Are Trusts set up? End of life directions?

Re direct care, I think the best thing you can do is just stay in touch and ask "how can I help"?

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