No Meds/No Follow Up for Alzheimer’s

[Anonymous]

Frustrated and need to vent.

Just learned that despite my MIL getting a dementia diagnosis well over two years ago, my FIL has decided to take no further action on her behalf. None. No follow up memory assessments, refused cholesterol lowering meds (she had sky-high cholesterol for three years prior to diagnosis), no studies (he reached out to one OOS connection, a relative, who said she wouldn’t qualify) and no outside help. He’s 80, she’s 76.

Also, we as a family are not to discuss her obvious condition. Very much a secret.

Still in their large old house with stairs and clutter.

FIL refusing all offers of help and DH seems to be fine with this - says he doesn’t want to “push” yet his dad is the sole caretaker, driver, cook, shopper, lawn care worker…all with MIL at his side. FIL has aged considerably and it is affecting his health but whole family is delusional and ill prepared.

I seem to be the only one concerned here and have done some research on adult day care, a local gerontologist, in home care and shared all with DH but every week I hear “next week I’ll talk to my dad about it” and then nothing happens.

Been down this road with my own late parents (planning, selling my childhood home, moving them to CCRC, getting in home care, accompanying them to doc appointments). Just hard to watch knowing there are no safety nets, no plans, nothing.

[Anonymous]

The meds can help a little in the early stages but at some point they are useless. Can you fly out for a few days or a week to help him?

[Anonymous]

Let it go

[Anonymous]

Anonymous wrote:The meds can help a little in the early stages but at some point they are useless. Can you fly out for a few days or a week to help him?

OP here. We are 2 hours away. DH disinterested and not taking any action and just following his dad’s lead.

So as PP said I guess I will just let it go. Still so sad to see the inaction.

This is making me want to formulate my own plans - and make certain that our DC and maybe my siblings will uphold my wishes re: medical care, living arrangements, home care, etc.

[Anonymous]

You know how this ends. One will have a major medical incident and if it’s him then he goes to rehab if he survives it and she goes to memory care. If it’s me, I’d have a plan for when this happens. Know what places are good and what they can afford.

[Anonymous]

While I understand your feelings, as someone who's mom has had a long, slow decline with Alzheimers for over 8 years now, let me advise you to let go of this need you have to somehow fix this problem or do something constructive. You simply must accept that there is nothing any medications or further assessments or studies or interventions will achieve. It would be a good outcome if my mom were to pass from a heart attack due to high cholesterol and I wish that for her rather than the alternative.

Your focus should be on supporting your FIL in his decision, offering support where he will accept it (send food, flowers, photos, and call and text) and spending whatever good time you can with your MIL. Funnel your need to feel in control by researching memory care options and figuring out a plan for when the crisis occurs, as someone above said.

[Anonymous]

Anonymous wrote:While I understand your feelings, as someone who's mom has had a long, slow decline with Alzheimers for over 8 years now, let me advise you to let go of this need you have to somehow fix this problem or do something constructive. You simply must accept that there is nothing any medications or further assessments or studies or interventions will achieve. It would be a good outcome if my mom were to pass from a heart attack due to high cholesterol and I wish that for her rather than the alternative.

Your focus should be on supporting your FIL in his decision, offering support where he will accept it (send food, flowers, photos, and call and text) and spending whatever good time you can with your MIL. Funnel your need to feel in control by researching memory care options and figuring out a plan for when the crisis occurs, as someone above said.

All of this.

[Anonymous]

Anonymous wrote:

Anonymous wrote:While I understand your feelings, as someone who's mom has had a long, slow decline with Alzheimers for over 8 years now, let me advise you to let go of this need you have to somehow fix this problem or do something constructive. You simply must accept that there is nothing any medications or further assessments or studies or interventions will achieve. It would be a good outcome if my mom were to pass from a heart attack due to high cholesterol and I wish that for her rather than the alternative.

Your focus should be on supporting your FIL in his decision, offering support where he will accept it (send food, flowers, photos, and call and text) and spending whatever good time you can with your MIL. Funnel your need to feel in control by researching memory care options and figuring out a plan for when the crisis occurs, as someone above said.

All of this.

+1. The only thing I would add is just to figure out your limits and gently convey them. The emergencies add up and then I had my own emergencies with the family I created and mom was full of rage because her plan was just to have me at her beckon call. Make sure no matter where you live-20 minutes away or 20 hours away they understand you may not be able to make it for an emergency. They can stop seeing you as human and you have to advocate for yourself. You make clear your concerns and what you think is best, but then you have to let go. I helped a lot and fought the good fight for better care, better setting, etc and in the end the sibling who did the least and wore blinders became the beloved and I was scapegoated and had many insults hurled my way. I finally had to step back even more.

I did endure quite the tantrums to get mom to accept an expert checking in our level of independence and keeping a binder on her health to advocate for her at doctor's appointments, hospital stays. Perhaps see if they will allow a geriatric social worker to check in on them. It can be less threatening to have an outsider make sure all is well and help with resources, etc. They are used to being the authority with us, so it's harder to show a vulnerable side.

[Anonymous]

Just posted, but also this is your husband's issue. You can let him know your limits and put out there your concerns, but these are his decisions to make.

[Anonymous]

It’s their life OP, and to the extent your MIL is no longer competent to decide for herself, your FIL is the only one entitled to decide. Looks like he/they would prefer for nature to run its course, with MIL’s heart not outlasting her failing brain. Maybe they even discussed this when she didn’t have any cognitive issue.

[Anonymous]

OP back with a heartfelt thanks to all. I have a new perspective now and feel better about the situation.

Especially poignant were comments that perhaps best to let nature take its course.

My mother in late stage heart failure spent the last two weeks of her life going back and forth to medical appointments (by her insistence) and got increasingly frustrated and angry about her limitations.

[Anonymous]

Anonymous wrote:

Anonymous wrote:The meds can help a little in the early stages but at some point they are useless. Can you fly out for a few days or a week to help him?

OP here. We are 2 hours away. DH disinterested and not taking any action and just following his dad’s lead.

So as PP said I guess I will just let it go. Still so sad to see the inaction.

This is making me want to formulate my own plans - and make certain that our DC and maybe my siblings will uphold my wishes re: medical care, living arrangements, home care, etc.

We've been going through this for at least a decade (my in-laws are closer to 90). And I think the only lesson we can learn is to make our own plans so we don't create the same predicaments for our children.

[Anonymous]

You are not the decision maker. If you were, you could choose differently. Until then, all you can do is help pick up the pieces when it all falls apart

[Anonymous]

OP, sometimes you have to see it as giving them the gift of autonomy. It comes at a terrible cost but it may be the thing they value most.

I know all too well the feeling of this hanging over your head. You can start setting boundaries now. Stop helping so much. Stop researching, stop trying, hear the message loud and clear that your input is not wanted. If you need something to focus on, you can also start saving up money and vacation time for the inevitable crises.

And tell your DH to stop bullsh*tting you. If he's not going to talk with his father he should man up and say so. He sounds like a total pushover who tells you what you want to hear because he's afraid to say no, and then is afraid to follow through.

[Anonymous]

Anonymous wrote:

Anonymous wrote:The meds can help a little in the early stages but at some point they are useless. Can you fly out for a few days or a week to help him?

OP here. We are 2 hours away. DH disinterested and not taking any action and just following his dad’s lead.

So as PP said I guess I will just let it go. Still so sad to see the inaction.

This is making me want to formulate my own plans - and make certain that our DC and maybe my siblings will uphold my wishes re: medical care, living arrangements, home care, etc.

It is sad, and you are very wise to make plans for yourself. I would seriously consider whether you want H to be your decisionmaker. You have no power to change anything with ILs, and so you are not responsible. You can support as they will accept it, maybe grocery delivery, cleaning service, who knows? Let yourself off the hook. Sometimes, no matter how much love and concern we have, we just have to accept that we are powerless to change something.