Committed to a date for memory care facility today

[leighbythesea2]

For my mom. 6.5 years of living together, most of it in my house. Alzheimer’s.
She had polio as a child, and that has been a compounding factor more recently. Also, she has a physical condition, that has been added. Significant.

I can’t do it anymore. She’s in good spirits, and is pretty mild tempered.

I have help, bc I work full time. The cost has become astronomical. People in my house 24-7 has been illuminating, in mostly negative ways.

Any advice on the transition?

And any advice on one specific aspect of caregiver burnout? Have had an over-riding sensation of total numbness. Or, very efficient compartmentalization —that’s so efficient it feels like numbness? Sometimes don’t feel connected to myself at all.
Have googled this many times and still don’t know. Assume it’s just survival paired with sleep deprivation. ?
I expect that to change.

[mercuryblues]

1. I would check to see if the care facility

has support groups for family. They can point you in the right direction.

[leighbythesea2]

5. Thank you

I will for sure do this. It’s a very nice place, they must have groups.

[niyad]

2. Sending vibes for best possible outcome for both of you. Here if you need us.

The feeling of numbness is quite normal. Between your job, and caring for your Mom, you have basically been 24/7 since you started living together, and you are no doubt completely wrung out.

Please be kind and gentle with yourself. Is there any way that you can take some time off? The stats on caregivers, especially family nembers, after the job is over, can be a bit unnerving.

[leighbythesea2]

7. I cannot take time off

Right now.
was hoping to hit a window in Jan and feb when may have been able to. But it was filled up with tests and specialists, trying to get to the bottom of moms new illness.
I also had 2 surgeries last year (cancer, but stage 1 so very good outcome) so I took FMLA twice! I kind of knew this was going to get tricky. My work environment is—shocking!—very understaffed. It’s a post covid landscape I guess, no matter the industry.
& I’m the only one who does my job.
May ask for just the ability to leave on any given day—if needed. Flexibility will be needed.
Guessing I don’t want to look at those stats.

[leighbythesea2]

10. & thanks for the kind words

And vibes

[niyad]

14. You are most welcome. Do not hesitate to lean on your DU family. Many have

been where you are, and there are plenty of strong shoulders, and willing ears.

[vanlassie]

3. Expect to allow many months to decompress.

Place no deadlines on yourself. Make no commitments that you can avoid. Feel no guilt if you spent weekends watching tv or napping. Take it easy.

[leighbythesea2]

8. Sound advice

I like it.
I haven’t been able to watch a TV program I wanted in 6.5 years. Took me a while to realize this bc was never a big tv watcher. Maybe I will watch everything.

[in2herbs]

22. IMO this is the best advice that can be given. Heed it! nt

[drmeow]

4. Look for

an Area Agency on Aging in your area. They often have information about caregiver resources.

https://acl.gov/programs/aging-and-disability-networks/area-agencies-aging

[leighbythesea2]

9. Thank you!

[Phoenix61]

6. I think that's emotional and physical exhaustion.

It’s like parenting but in reverse. Part of what keeps parents going is the knowledge it gets easier over time. The delight when a child takes their first step.. With an aging parent it gets harder and there’s nothing to be done about that. I was ably to quit work when I started caring for my mom but it was still a long two years.

[leighbythesea2]

11. I figured exhaustion

The hyper-vigilance. Not sustainable, and to your point, it’s not going to get easier. So depleting.

[Faux pas]

12. I

did 10 1/2 years taking care of my mom with Alzheimer's.
I had retired early, so I did it alone for 7 years. The 7th year was when she was finally diagnosed. That was because she was so disoriented I had trick her into going to the Dr. That was when I finally got someone to help me out and started getting paid as her 24/7 caregiver.

Ten and a half years was my total breaking point. That's when she went into memory care. Lol it was a nightmare for me, her clothes were stolen a lot and I had to constantly buy her more. She did well there for 15 months. Then she died of kidney failure. I blame the staff for that. She always carried a travel mug of water. It wasn't until she got sick that they checked that mug, it was full of oreos!

I feel for you. Working and taking care her has to be extra stressful. I would think it could only get better when she gets into memory care.

Sending you and her my best vibes

[leighbythesea2]

15. That's so long!

10 plus years! Oh my gosh. It’s so much work. I admire you. You did well. I kept saying to myself “I have to feel like I did everything I could”. My system is pretty much signaling I have.
I worry about the insides of these places, of course. We’re better as family members! But I’m starting to realize without any stamina, I’m quite average now.

[UpInArms]

13. Please do not take this in a negative light,

It sounds as though you have disassociated …

Which can be good, in that it allows you to process everything at a slower emotional pace

Best to you in all ways … thank you for being so able to care for someone so ill

(((((((Hugs)))))))

[leighbythesea2]

16. I ran across that

Term. No offense taken! It made some sense. I was quite keyed up, for years? Then I felt flat-lined. It was a relief, frankly.
But so, so strange.
Thank you for the hugs. The isolation has been real, too.

[LoisB]

17. My only advice is: you MUST take care of yourself.

[SheltieLover]

18. Healing vibes on the way! 💓💓💓

Please engage in good self-care.

Cook healthy meals with the intemtion of reconnecting with yourself, watch funny movies, work out, treat yourself to whatever it is you modt enjoy, and above all, please be gentle with yourself.

Call your local Council on Aging & local senior center & ask about support groups. Groups are extremely powerful because of the universality of the experiemce.

Someone is qlways on here, please feel free to lean hard on our community. A heavy burden spread across many shoulders becomes bearable.

[leighbythesea2]

33. Thank you!

Very glad to have this forum topic on DU!

[3Hotdogs]

19. If you haven't done so already, call your county Bar Association for referrals to Elder Law attorney

services.

Also, were your father or mother veterans?


After I got my mother placed, I experienced a deep sense of calm. I hope you experience the same.

[leighbythesea2]

28. The attorney

Who she had do her trust, is an expert in elder law. Got lucky there!
Wishing for that sense of calm too!

[pazzyanne]

20. Article below has information about Medicade and state programs for caregivers.

https://www.theseniorlist.com/caregiving/caregiver-funding-by-state/#:~:text=For%20instance%2C%20California%2C%20New%20Jersey%2C%20New%20York%2C%20Washington%2C,a%20week%20to%20%241%2C000-plus%20in%20family%20leave%20support.

[Warpy]

21. No advice,just be aware that your mom will likely change quite a bit

when she doesn't recognize her surroundings any more, her anxiety is likely to surface. I hope the facility has areas for people to walk while not getting lost, wandering is one way Alzheimper's patients deal with anxiety.

Don't beat yourself up about this. In the first place, we can only do what we can do and you've hung in there longer than many. Second, not recognizing her surroundings would happen wherever she is, such is the nature of that awful disease.

I hope her transition is a smooth one for both your sakes, so you can relax and enjoy her while she's still there to enjoy.

And yes, sleep deprivation can mess with your head more than you think, and it won't do either of you any good unless you manage to correct that, which is not going to happen while she's living with you. You will miss her in many ways, but not that one.

[leighbythesea2]

32. The facility

Is quite nice. And 2 miles from my house. Like so nice on the assisted living side I’d live there. So that part is good.
She’s so shuffling, like super slow shuffling I don’t think that will be her anxiety mode. And her polio was in her arms, so if you can imagine this little lady with no muscle in her arms—combative is and would never be a thing.
She can’t use a walker or a cane. We just stay close or use a gait belt.
She did a year of rehab when she was 9, and the way she gets out of bed is very unique. She can’t get up in any kind of hurry. Really nothing in a hurry. So don’t fear they will be chasing her etc.
we shall see. I do look forward to sleeping, my job is demanding, and I’m at my function limit.

[Warpy]

36. Well, she might want to be combative, but it sounds like she won't be any good at it

It doesn't matter if the facility is nice, it's just not home. You will likely have a sleepless night now and then when the facility calls to have you sit with her, but that won't be every night. It will still give you more rest than having her home. You won't have to sleep with one eye open.

[leighbythesea2]

37. Agree

I do expect some of that.

[Hope22]

23. We were able to make my Mom's room look a lot like her space in senior living.

We put her artwork up and made it cozy. She actually adjusted pretty well to memory care. I hope your mom is able to find a piece of home there.

Your self care has taken a back burner and now it is time for you to invest in your health and well-being. I was caregiver to my sister for five years. Even with the memory care and home health aides I still thought I might die before she did. All I can say is rest when you need to. Get some kind of exercise plan going if you don’t already have one and search out a caregiver group, maybe through hospice or the facility she is going into. Talking helps, setting boundaries helps and at this point shear rest will help.

You did an awesome job now it is time to fill your cup so you can continue to keep a watchful eye on your mom. I will add that no matter how much you have done there will come a time when you will doubt your efforts or feel like you could have done better. Kick those thoughts to the curb. You did it, you did your best. You are still doing it. Love to you and your momma. 💗💗🙏

[leighbythesea2]

30. Thank you

Very kind a supportive words. & we will decorate the best we can, I have a lot of her things. I’m sure I will waffle, but I also know my mom would have reached a point w her own mother, where she would’ve recognized her limits.
My grandmother had Alzheimer’s & actually died of a heart attack in her home. My mom checked on her everyday & did the caregiving. But she was not advanced, and as I mentioned my mom had polio so she was handicapped (but extremely capable of course). Still, she would not have been able to handle my grandmother as a constant fall risk, etc, like I am. The physical nature of it would’ve created the decision.

[Hope22]

31. Take care and know that you are on the right path.

Love to you!🙏💗

[Laura PourMeADrink]

24. Don't do it? Just an option. My mom had my dad

at home until the very end. ( 30 year decline until he was 98) Just saying there's a special kind of satisfaction and grace in bearing it out. You can never regret that?

Not in your situation for sure. Just an option to ponder. Take my comment as well intended, please.

[Skittles]

25. you have done your best, and you are STILL doing what is best for her

get your mum situated and then you take some time off just for yourself, it is WAY overdue

[sprinkleeninow]

26. Take care of yourself. Feel no guilt.

My mom. I reviewed that we could have done it differently, better. No. Her best friend said don't do this to yourselves.
🕯

[leighbythesea2]

29. Ah

My moms best friend (they carpooled to work for 30 years) took care of her mother-in-law. She’s been the most vocal with me that I’ve done a lot, enough, etc.

[7wo7rees]

27. Look up this: "compassion fatigue".

I had to place my mother in memory care last July after caring for her for 5 years. I was wiped out. (I was also living with someone who weighed 450#'s and left after 23 years).

All of the suggestions here are very good. Find a support group. There are many through Alzeimers Association. alz.org

Be kind to yourself. You are doing your best. This is the cruelest of diseases.
My heart is with you.

Ms7wo7rees

[leighbythesea2]

34. Right

Terrible disease. She’s at least 10 years in, so the course has been slower than expected. All things considered we’ve done ok.
But yeah, my bone marrow is tired. You had a heavy load there. Definitely kind of lose your autonomy as a person.

[7wo7rees]

35. Believe it or not, "compassion fatigue" and "burnout" are different.

I confronted the doctors that had been caring for us on this. No good answers. They really don't want to talk about it.

You will be ok. Everything in this thread has been good advice. Take care of you, give yourself space to feel bad and feel ok. Find support. I'm here if you want to correspond or to talk.
Much love to you and what you are dealing with.

Ms7wo7rees

[leighbythesea2]

38. Thanks

I may have questions for you. Have never really written people directly here, but that would be ok?

[7wo7rees]

39. Sorry, was out all day. Absolutely ok to DM me. Ms7wo7rees