Searching for perspective. I am so, so sad and worried it's too soon for MCF.

coastal_kid

Hi there, I joined recently and was so unbelievably appreciative of all of the incredibly thoughtful, honest and kind feedback I got in my first post, weeks ago. Thank you. The following might be more of a journal than a request, but I am pleading for perspective.

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We have selected a MCF for dad (79, Stage 5 Alzheimers). My mom (75) is exhausted of chasing him around their 6.5 acre property, steering him away from power tools, arguing with him about not staining the house (he wants to pressure was and stain, which isn't necessary), and keep him from putting electronics in the sink or the electric kettle in the microwave.

She's 75 with two young grand kids she doesn't see nearly enough due to her daily challenge of caretaking.

Dad's got moments of clarity, like, crystal (ok, foggy crystal) clarity. For three days last weekend, I pretty much had my dad – with the exception that he can't solve problems for shit (see you later, executive function). We were pontificating about life and nature, talking about Season 2 of Prehistoric Planet. But then yesterday morning, he had woken up and put a coffee mug in a pan on the electric stove to "make coffee", and was very confused. It was helpful for me to see that and give me some perspective about what mom's dealing with on the daily. After his brain kicked into gear, we went searching for the SE property corner, whacking through the overgrown salmon berry and elderberry to try and get to high land, using little tape signals to mark the path. Pretty sure in his current condition he could still get me out of the woods better than I could.

I have a very close relationship with my dad and think the world of him. I am an only child and I'm having a really hard time with this transition and constantly question if we're making the right choices.

My mom is insisting it's time for him to go, she's afraid of the hallucinations that are to come (he's had two small ones, I think), and exhausted by the constant push-pull with him. She's dealt with it for 41 years, but now is a lot harder.

We had planned on putting him in care before the winter, because he really can't be in the house another winter. He fixates on packing the fireplace with wood every 2 hours at night, so the transition really needed to be made. We were thinking September.

Two weeks ago, she called me and said we were going to move him next Tuesday (it was 8 days away). I panicked, called the MCF to understand flexibility, and convinced her to give us another two weeks, until the end of July. She complied and said "not another day". We really hadn't talked to him at all about this until then.

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I've spent the week at my parents house, without my wife or young kids. My mom and I are working well as a team to make preparations and I've been able to push the move in date to mid-August.

I've been warming him up to the idea of going into a facility; he understands it's behind a locked door, and why. He understands that this is going to be his next step, and seems to even be getting a little bit excited about the things that he wants in his room (cd player w/ classical music to fall asleep to, etc). I reminded him that he likes to help people, and that he could help push those who aren't any longer mobile in their wheelchairs when they go on outings. He liked that.

He and I talked about his legacy, that he’s lived a long life. I shared what he has given me; the love of the outdoors, the importance of living in the moment and coming up with my own ideas and points of view. Pride in your craft.

He shared concern that Mom was filtering the information to, and from the doctors. I reassured him that I was a third-party, and that the information was clean. I shared that what I hear from mom is pure love, and the fear of the unknown. He shared that he doesn’t want to leave mom alone, and I told him she won’t be alone. And he will leave her with land and family she could never have done without him. 

He agreed that she has a strong community of friends and support, and won’t be alone. He talked a little bit about his mom‘s age when she died, and reflected that it was probably comparable to his age now. And that he’s lived a good life and accomplished things. we talked about music and subwoofers and TV shows. And hoping that he could find somebody who might share the same interests.

He is still talking about projects that he's going to get to "as soon as the overgrowth dies down in summer".

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I am such a wreck. We can't have him at our house, it would be too distructive to my wife or raising my young kids (he's arguably a difficult person, even before Alz). I miss him already and am will miss the moments of he and I quietly working outside together (mostly him working and me holding tools). I am not certain he's "ready" for memory care; the facility is pretty institutional but has a nice outdoors courtyard and a little bus that takes folks out (which was the tie breaker to a more homey place), but he doesn't have any hobbies other than working with his hands outdoors or building things. I don't know what he'll do there.

It was helpful for me to see how confused he was yesterday morning and felt more at peace with the month-timeline. But every day is groundhog's day and I wake up with the same "it's too soon" dispair, feeling helpless and worried and scared. I cry a lot.

I guess I'm looking for the silver bullet that doesn't exist. I think that I need to prioritize my parents lives here to maximize my mom's. I'm in a frenzy trying to hit the balance perfectly of stretching mom a little bit more than comfortable so I can hit that perfect time for dad, but I don't think I have the ability or perspective to do it perfectly.

Please share your perspective.

Quilting brings calm

I’m going to be very very blunt here.

No it is not too soon. You decide what’s best based upon their worst day, not their best day. You decide based on what their 24/7 caregiver feels and what the 24/7 caregiver needs. Your mom has told you what that is ….and you are discounting her decisions, ignoring them and going behind her back to counter them. You could cause her to lose your dad’s spot.

what are you waiting for… your dad to set the house on fire and your mom to get burned trying to save him?

there is nothing that precludes you from taking your dad out of the MC to go eat etc…. Except you will then be the one trying to get an agitated dementia patient back out of the car and into the building.

you are feeling guilty - and there is nothing for you to feel guilty about. You didn’t give your dad this disease. All you can do now is get your mom in a lifeboat before the ship wrecks.

coastal_kid

Thank you @Quilting brings calm.

Quilting brings calm

https://alzconnected.org/discussion/comment/177539#Comment_177539

I was hoping I hadn’t offended you. I’m just very concerned about you and your mom

coastal_kid

:) I'm not going to lie @Quilting brings calm , I was initially like "hey, now". But you're right and it's exactly the perspective I'm looking for. I apparently need a push getting over this hump – and adore my mom and want her back.

mommyandme (m&m)

Just want to say sorry for your heartache. This is a very difficult journey.

I agree with Quilting, your mom’s life is just as important as dad’s. Your dad’s hobbies and interests may slow and fade, unfortunately. Maybe he will be happy putting a birdhouse/feeder together, painting it, and putting it outside his window at the facility.

it will be an adjustment for sure, yet as you “accept and adjust” to each new reality, things won’t seem so overwhelming. Again, so sorry.

housefinch

I’m incredibly sorry for your sadness and pain. At least you are asking for others’ input here. You should be commended for that. The heartbreaking part is having to take a deep breath and really absorb reality. I would just urge you to align with your healthy parent to support her needs. Your mom really needs you to get on board and help her have the healthiest life moving forward that she can. Finding a way to accept this heartbreaking reality will be a gift you give to your mom. As many people have said very wisely in other posts, your dad may not be happy in MC. He will be safe. Sending you strength and support. (I’m a sandwich generation daughter with stepdad with dementia, with extended family with varying responses to these dementia milestones—-it is very hard)

zauberflote

@coastal_kid hello and welcome! I know exactly how you feel about making it "the perfect time" for dad, but there will be no perfect time for both your mom and you. Your mom is already frantic and past the end of her rope. I say this as a woman near her age with an adult-child--with-special-needs. I know the physical feeling of "I cannot do this one more day because it's going to kill me". My sons still sometimes think I'm superwoman, and I assure you, I'm not! I used to be, but I'm worn down. Your mom may be feeling less like superwoman than you want her to ("stretching mom a bit beyond comfortable")-- she may already be way overstretched, and very glad you are there to help out.

These conversations you had with your dad are beautiful. I am so glad you're getting that privilege! Remember every word, and be ready to share with mom if there comes a good time.

Once dad is in his MC, your mom can go back to being his wife, rather than the totally depleted and drained Chief Safety Officer, and you can be the son who regales dad with stories about things you made him do when you were young!

M1

just jumping on the pile here. It's not too soon, dear. You can wish till the cows come home, but I doubt that you want to lose you mom to this disease as well as your dad. Let it happen and go from there. Frankly, it's really your mother's decision, too.

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dawnipoo

Hi all. New here. Dealing with 2 parents in their 80s. Mom, full blown dementia, multiple health problems. Dad a bit better off health wise but dementia almost as bad as moms. Only caregiver as only sibling, younger brother who is just unwilling to help. I am going on a beach vacation in a few days, first vacation in 2 years, very needed. However, worried what may happen while gone. Have meal-prepped, tried to hire someone to go 3× a week to check on them. Was informed today, caregiver only able to come 1 of the 5 days I'll be gone! My thoughts are to contact the church for possible help. Any other suggestions would be welcomed. Thank you.

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usernamesarehard

Hi coastal kid! I'm brand-new to this forum, and I too have/had worries about whether it's too soon for my dad to be in memory care, which is where he is now, at least temporarily.

From what I've read, barring a BLATANTLY obvious incident -- burning the house down, killing someone while driving -- it doesn't seem like there is a "now is the time" sign that is crystal clear.

I'll tell you my story, and how I made, to the best of my ability, the decision your family is facing.

My dad is 82 and lives alone, in an apartment 5 minutes away. We moved him across the country 2 years ago because he wanted to live near me. For 2 years, I've been watching as he shows more and more signs of cognitive decline. I've been worried for months that something catastrophic would happen. I was actively working on finding an assisted living facility for him, since he fell getting out of the shower 5 weeks ago and called my name until his neighbor heard him and called me.

I went to take him to a doctor's appointment 3 weeks ago and found him naked, awake, and delirious. Couldn't talk to me. Didn't know who I was. Couldn't put briefs on, couldn't stand up. I called 911, we went to the hospital. UTI? No. Stroke? No. Severe malnutrition, dehydration, and possible alcohol abuse? Yes. He is still pretty lucid but his ability to assess risk is bad, apparently he was not feeding himself properly, he is getting increasingly paranoid and delusional. (There are many other signs, but those are the ones that this incident has brought out/to the surface.)

Then off to rehab, where he was furious and agitated, constantly eloping until they transferred him to a facility with a memory care unit. He was diagnosed with vascular dementia while in rehab. He is now in a very nice, dedicated memory care assisted living place. It might be temporary -- placing him there was a decision I made out of desperation, and it's possible that once he's been there for a while and calms down, they will reassess him and say that assisted living (not memory care) would be fine.

If my dad was able to live with someone full-time then he could stay home, but we don't have access to that (it's just my husband and I). The hospital and rehab were pretty unequivocal that he could no longer live alone.

He is not happy about where he is. I'm visiting him after work today for the first time. I know he's furious with me. He told me that I'm a bad daughter for not helping free him from rehab (which I absolutely couldn't do even if I had wanted to). He might not even agree to see me today.

Okay. I say all of that because I DO think that my situation is one that, if we had more family here, if he lived with my mom, if he could have (logistically, and if he would accept) in-home care, he could maybe stay home. But when I read your post, I didn't see that maybe. I can feel your anguish and grief in your words. You love your dad so, so much. But. Your mom is telling you that now is the time. That's your sign -- the main caregiver is ready for the person with dementia to move.

I also want to point out that you yourself said you can't have him at home because of your wife and kids. Your mom IS your wife and kids but in a different house. If he can't be with them, he can't be with her anymore, and it SUCKS and I'm so sorry.

Your dad will be able to do activities in memory care. You can bring projects for him to help with. You can be part of his new life.

I have no business giving out advice because I'm so new to all of this, but I wanted to share with you that I do believe too soon is better than too late, and that you are not alone in the maybe-maybe-not-ness of it all.