Author Topic: Alzheimers Diagnosis for FIL...  (Read 2355 times)

emiloots

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Alzheimers Diagnosis for FIL...
« on: September 21, 2018, 04:19:32 PM »
My father in law was very recently diagnosed with Alzheimers, he's only 70.  Based on the little information I have and what I've read he's probably approaching moderate stage.  There are four siblings, but we are really the only ones who would be able to help the most with care etc...two live too far and the third would help but doesn't have the flexibility with his job that we do.

Here's the rub - they live an hour away.  We'd like them to move close now when FIL is still pretty intact congnitively and a change in location would be less disruptive than in the future when he may have a difficult time adapting.  MIL doesn't want to move because he's familiar with the area they are in and she can trust him leaving the house to go to the store etc...They don't have any friends that I know of so there's no social aspect they would be giving up.

We both work full time, have 3 kids in all the time-sucking activities, pets, a large property with a lot of maintenance so our life is full.  The help we'd be able to provide with them an hour away would be mainly on weekends or in a truly 'I need you' situation.  If they were just down the road we could help so much more and give my MIL a break when things progress and she can't leave him alone.

Any advice on how to present this is a way that is more convincing?  I really think this is the best path but maybe my intentions are misplaced...I've never had to deal with demetia or ALZ in my immediate family so this is all new. 

Sibley

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Re: Alzheimers Diagnosis for FIL...
« Reply #1 on: September 21, 2018, 09:12:03 PM »
Sadly, just wait a while. It's different for every patient, but realistically, his disease progress will force your MIL's hand.

It would be good now to try to get them to start going through stuff if you can. Every box you can donate/sell/toss now is one less you have to deal with later.

It would be good for everyone if you can find support groups. Having someone who knows what you're going through is helpful. The world of dementia care is very different from the rest of the world. People who have dealt with whatever stage you're dealing with can offer tips and experience.

former player

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Re: Alzheimers Diagnosis for FIL...
« Reply #2 on: September 22, 2018, 01:57:06 AM »
I'm sorry for the diagnosis.

Can I just point out that your life is already more than full?  Two full time jobs, three kids, pets and a lot of property maintenance.  You probably have time to add in more social time with your in-laws if they lived near by.  But you do not have time to become carers for your in-laws, which is what would be required.  Believe me: I've been a carer.  It is an unlimited time suck and utterly relentless - there are no weeks off, there are no days off, and it will get to the stage with a dementia patient that there are not even any hours off.  You do not have time in your lives for that without something else major falling away.  Personally, I was a carer without the job or the kids and I still ended up with a garden gone to waste because I didn't have the time or energy to deal with it as I prioritised the caring.  (No regrets, I did the right thing, but looking back a meadow that turned into solid gorse 4 feet high is the clearest indicator of how much work and effort caring is.)

I think your MIL is doing the right thing for the moment.  Please remember it's not just about FIL, it's also about your MIL keeping as much as she can of the life she's made for herself, with her own routines, own friends and activities, her own local support systems.  So let her know that if she does want to move closer you will do what you can for them both, but please don't pressure her to move.

What you can do at this stage is organise support for your MIL where she is.  This can take two forms.  The first is for her to have (paid) support with things like cleaning, laundry, cooking and gardening so that she has more time and energy to spend with FIL.  The second is for her to have (paid) support with FIL directly - someone coming in on a regular schedule to help with him so that she gets a break.  Yes, this costs money.  But it has the big advantage that as well as making life easier for your aging MIL help like this will probably make it possible for FIL to stay in his home for longer, and that is likely to be cheaper and better all around than his going into a home.  This is of course likely at some point, but you should be able to put that point off by putting necessary support in now.




bestname

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Re: Alzheimers Diagnosis for FIL...
« Reply #3 on: September 22, 2018, 09:31:53 AM »
They may do well to speak with an elder care attorney who can ensure your MIL has everything possible in place to make decisions for her husband (medical and financial).

twe

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Re: Alzheimers Diagnosis for FIL...
« Reply #4 on: September 22, 2018, 12:09:06 PM »
Unless your in laws are different than mine, my parents, and the parents of almost every other person I know who has gone through this, they will not cooperate. I think it's for a few reasons. 1) They are scared and in denial 2) as people age, they lose the cognitive ability to make good decisions (of course, this assumes it was ever there) 3) A desire to remain independent while simultaneously ignoring the huge burdens that places on the people who care about them, while not actually being independent but rather dependent.

2 things to get they probably won't want to give you: 1) A springing general power of attorney 2) Health care POA. Those 2 things make life much easier.

I see 3 potential courses of action. 1) Ask nicely, using logic and facts. It sounds like you've already done this. 2) Withdraw all help-no visits, no grandkids, etc. Let them make their own bed and lie in it until the day comes when you just show up and move them. Option 3) spring into action whenever they need it, but at the cost of your own life and family (this is what most people end up doing-me too, although I did try 1 and a version of 2). With the benefit of hindsight, I would have used the springing power of attorney and started World War III, and it would have been the right thing for everyone.

I would not find or provide any support now. That's just enabling poor choices. If you mil wants to, she can, but you should not. It just makes it harder, not easier.

Having gone through this, the best possible course is to move into a continuum of care retirement center, where there is independent living, assisted living, a memory care unit, and skilled nursing. It provides a community, and a safe place. It can be expensive, but depending on your location, may not be that much more than their current spending as all food, utilities, etc are covered. It also lets them age in place while remaining as independent as possible. I recommend looking at faith based CRCRs, regardless of your personal religious inclinations. They are usually the best ones as they prioritize resident welfare over profit.

I'd also add, memory issues get worse exponentially. There is no plateau, and the things you don't know are happening are even worse than what you do know. Memory loss is an ugly, ugly disease.

There is no good solution, unfortunately. You can only do the best you can. Whatever you do, don't let yourself feel guilty, for either what you do / don't do, or how your in laws react to your actions.

bogart

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Re: Alzheimers Diagnosis for FIL...
« Reply #5 on: September 22, 2018, 08:42:03 PM »
I'm sorry you're dealing with this.  I want to chime in and say as others have that it's not obvious to me your MIL is making the wrong decision -- and I say this as someone who lost her dad to dementia, so I know how it works, and totally get the advantages of someone moving while they still have an ability to learn new patterns.  But I also get wanting to stay in place while systems are still working and not expecting those systems to be able to be re-initiated in a new place.  Either (making the change now, or waiting and facing it later) is risky and stressful, and it won't be obvious except with hindsight (if then) which was "right."

Sibley

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Re: Alzheimers Diagnosis for FIL...
« Reply #6 on: September 23, 2018, 10:17:58 AM »
One other thing. Consistency and familiar surroundings are very good for dementia patients. It is possible that moving him NOW will result in a significant decline, where otherwise you might have a much slower decline. So if he's relatively stable and ok now, that may change in a hurry once moved.

Cassie

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Re: Alzheimers Diagnosis for FIL...
« Reply #7 on: September 23, 2018, 12:05:28 PM »
Having been through this moving now would cause a faster decline so best to stay where they are for now.  They can always move when MIL decides the time is right. My parents are gone but I would have never tried to force them to move, etc.  Provide as much or as Little help as you can but allow your MIL to make her own decisions. 

MayDay

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Re: Alzheimers Diagnosis for FIL...
« Reply #8 on: September 23, 2018, 12:07:49 PM »
I would do two things:

First,ask them to move close to you so you can help more. List the things you'll be able to do if you are close (take FIL to kids activities to give MIL respite. Drop groceries off.  Come to Dr. Appointments etc). Tell them you will help them move etc.

Second,if/when they refuse, outline exactly what you can and can't do. We can come by your house on the weekend to mow, but not every weekend because sometimes the kids have activities. So you'll have to get a lawn service as backup. We can come if it is an emergency situation but we can't come for regular doctor visits. We can't provide respite care for you to run errands, you'll have to hire a carer. We can't help with tasks of daily living. We can't always come for an emergency because it is too far to leave the kids alone if one of us is out of town. Etc. Try to brain storm all the things MIL will need help,and be honest that with kids, jobs, etc, you can't do most of them.

elliha

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Re: Alzheimers Diagnosis for FIL...
« Reply #9 on: September 23, 2018, 12:22:00 PM »
1. How healthy is MIL? If she is well at the moment I think it actually pretty wise for them to stay where they are and let them enjoy their life as normally as possible for the time being. If she is also the same age she could be able to take care of him and their home for at least a couple of years depending on how fast things move.

2. Plan together with MIL and to an extent FIL if he his able for the future. What is their and your ideal scenario? What is the realistic scenario? How much can you help? Can the other relatives help with money to for example help MIL hire someone for whatever tasks necessary? Can they provide support via phone for some things?

3. Realize that you still may have to pick up the pieces and make a back up plan based on your wishes.

4. Don't forget the fun stuff, make sure to visit and enjoy the good times now when FIL is still able and you do not have to think too much about his condition.

okits

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Re: Alzheimers Diagnosis for FIL...
« Reply #10 on: September 23, 2018, 06:33:48 PM »
My heart goes out to you.  My own FIL was diagnosed with Alzheimer's in his 60s and he and MIL live almost two hours away.  We are also the closest family who can offer support.

Please understand that all of you will go through a mental journey; you of realizing and accepting that the choices are theirs to make and they'll choose what they want, not what is (or what anyone else thinks is) optimal.  Their journey involves understanding and accepting what the disease is, how caregiving works in real life, that their lives now include dependence and limitations, and that the future they dreamed of is not going to happen how they want.  It is a hard mental journey to take, full of grief and stress and conflict.  But if they can't currently accept how the disease is going to affect their lives they can't make big choices to adapt to the reality they don't accept.

Offer them kindness, sympathy, love, and honesty about what caregiving you can realistically provide.  And patience and understanding as they work through the new reality of how their lives have changed and what their likely future will be.

4. Don't forget the fun stuff, make sure to visit and enjoy the good times now when FIL is still able and you do not have to think too much about his condition.

Also, this.  Your FIL will never again be as much himself as he is right now.  The disease is just going to take more and more of him as time goes on.  Enjoy what he can do now and the time you can have together now.  Focusing only on his illness robs you all of joy and wastes the precious and diminishing time you have left together, while he's still mostly his true self.

pbkmaine

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Re: Alzheimers Diagnosis for FIL...
« Reply #11 on: September 23, 2018, 06:56:20 PM »
I have a few people in my life with various types of dementia. It is interesting what goes and what stays. Math ability seems to depart early, as does short-term memory. But longer-term memories stay for while, and music never seems to leave. You can use music as a bridge to communication when nothing else works.

Miss Tash

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Re: Alzheimers Diagnosis for FIL...
« Reply #12 on: September 23, 2018, 07:51:56 PM »
Have you read the book "The End of Alzheimer's" by Dale Bredesen yet?  Might not be too late for FIL...

Pigeon

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Re: Alzheimers Diagnosis for FIL...
« Reply #13 on: September 24, 2018, 07:04:35 AM »
I've dealt with this with 3/4 parents and inlaws and I'm sorry you are facing this.  Several of my friends are also coping with parents in a similar situation.
 Alzheimer's is horrible.

There probably are no good answers here.  Moving will likely cause your FIL's cognitive processes to decline faster, so that's one factor to consider.

What seems to be fairly common in  my experience and with that of my friends, is that the caregiver parent will do everything they can to cover up and minimize the extent of the problems to you.  They are terrified of change.  Your MIL may not want to admit to herself how bad it is getting, much less to you.  If your FIL took care of the finances, I'd be nervous about that.    I'd also be worried about him continuing to drive, if he's doing that.  With my FIL, he continued doing those things when he should not have been.  MIL never handled the money and she had no clue.  Finally, she turned all the bill paying over to dh and while it was a pain, at least things got handled.  Your MIL is probably about the same age.  Taking care of someone with Alzheimer's is exhausting and stressful, and it may become too much for her fairly quickly.

Honestly, I can't imagine trying to manage this long distance.  It was hard enough to  do in the same town.  See what kind of services her town has for seniors and maybe talk to his doctor about referrals to social workers to find out more.

I would starting investigating memory care options.  A few years after my FIL died, after having a fall and breaking his back, MIL came down with Alz as well. She moved in with my BIL for a time and that was horrible for everyone involved.  I did a ton of research on memory care facilities in the area.  There are some truly horrible places, but there are some places that are amazingly good.  MIL was a million times happier when she moved into one.  It was quite expensive, but she had the money and it was worth every penny.   

Catbert

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Re: Alzheimers Diagnosis for FIL...
« Reply #14 on: September 24, 2018, 11:45:47 AM »
I have no personal experience with Alzheimer's, however, I am probably your Mother's age (mid-60s) with a husband in his early 70s.  If my DH were diagnosed with Alzheimer's I can't imagine wanting to move!

I'm still capable both physically and mentally (at least I believe I am).  Where I am I have friends and friendly neighbors who could help a bit.  6 people each volunteering to do 1 thing would be a more attractive situation to me than relying on 1 busy son to do all 6 things.  If my DH was still capable of being left alone or leaving the house by himself, I would be afraid he would lose that capability if we moved to an unfamiliar house and neighborhood.  My general plan would be to keep him at home as long as possible with paid help as necessary and then move him to a memory care facility when it was too much.  I have the money to pay for help.  No way would I give up my independence any earlier than absolutely necessary.   

This, of course, is me and your parents situation may be entirely different.  But this may be what your Mother is thinking.  I suggest that you and your wife discuss/decide how much time and responsibilities you are realistically willing to provide. Maybe that includes the difference between what you can provide from an hour away and what you could provide if they moved closer.  Then talk to her about what she/they need/want.  For example, if your Father is the one who always did the finances you could take over that (or help your Mother figure it out) whether you live close or far.  You can use the internet and phone to find resources to help their situation  even from a distance.

Edited to add:
I have several friends who have had their parents move close or move in.  One of the hardest unanticipated issue is that the parents now have no one except the close-by family member(s).  No friends, no known neighbors, no church members, no nothing except the younger family member(s).  They took on more of a burden that they anticipated and possibly more than they needed to. 
« Last Edit: September 24, 2018, 12:15:07 PM by Catbert »

emiloots

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Re: Alzheimers Diagnosis for FIL...
« Reply #15 on: September 24, 2018, 05:06:31 PM »
Thank you all, I am overwhelmed by the responses!

1. How healthy is MIL? If she is well at the moment I think it actually pretty wise for them to stay where they are and let them enjoy their life as normally as possible for the time being. If she is also the same age she could be able to take care of him and their home for at least a couple of years depending on how fast things move.

Other than well controlled congenital HBP she is very healthy, eats well, keeps a healthy weight...so she'll probably outlive us all!  I think the stress will get her if anything, she's not a very tolerant woman and tends to play the victim a bit so I can see some resentment in our future about pretty much anything and everything - there's a lot of no-wins in our life with her.

I think everyone is in a little bit of denial, my DH is still very upset about it.  We've known something was wrong for a while, but having a concrete diagnosis has been difficult for them.  Unfortunately, I'm the daughter-in-law to I have to tread lightly with suggestions etc...based on your feedback I think a starting plan would be as follows:

1.  Have DH go to neurologist appointments, my MIL doesn't ask any questions and seems quite in the dark about all of this
2.  Check on what (if any) legal documents they have set up, and remedy anything that needs updating and/or drawing up, find Elder Care lawyer
3.  Increase our family visits for quality time as well as help MIL go through things if the time is right (FIL is a bit of a collector - theres a lot of stuff...)
4.  Research services available (including respite care) close to my in-laws for when MIL needs decides it's time for help
5.  I've started researching places in my area that have progressive care/memory care for when they are ready to move closer

We are completely in the dark as to their financial situation other than she has a pension (amount unknown), other investments arunknown, they both have SS, not sure about medical - eventually this will need to be discussed.

I'm a planner, and a ridiculously practical person -  yes it's devastating and sad but I'd hate to see anyone making uninformed decisions because we didn't prepare for the inevitable.  My father lost a 5 year battle with cancer when I was a teen and although I'm sure my mom lost her shit every now and then - she had all of her ducks in a row financially, legally, and knew her options when it came to care..even the funeral was mostly setup ahead of time.  Thank you all - I'm sure at some point the pandorica will open on their legal and financial information and I'll be back with more specific questions.