Elder-caregivers
Related: About this forumCommitted to a date for memory care facility today
For my mom. 6.5 years of living together, most of it in my house. Alzheimers.
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 cant do it anymore. Shes 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 thats so efficient it feels like numbness? Sometimes dont feel connected to myself at all.
Have googled this many times and still dont know. Assume its just survival paired with sleep deprivation. ?
I expect that to change.
mercuryblues
(15,261 posts)has support groups for family. They can point you in the right direction.
leighbythesea2
(1,217 posts)I will for sure do this. Its a very nice place, they must have groups.
niyad
(120,662 posts)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
(1,217 posts)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 isshocking!very understaffed. Its a post covid landscape I guess, no matter the industry.
& Im the only one who does my job.
May ask for just the ability to leave on any given dayif needed. Flexibility will be needed.
Guessing I dont want to look at those stats.
leighbythesea2
(1,217 posts)And vibes
niyad
(120,662 posts)been where you are, and there are plenty of strong shoulders, and willing ears.
vanlassie
(5,900 posts)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
(1,217 posts)I like it.
I havent 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
(3,227 posts)drmeow
(5,330 posts)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
(1,217 posts)Phoenix61
(17,723 posts)Its 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 theres 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
(1,217 posts)The hyper-vigilance. Not sustainable, and to your point, its not going to get easier. So depleting.
Faux pas
(15,421 posts)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
(1,217 posts)10 plus years! Oh my gosh. Its 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. Were better as family members! But Im starting to realize without any stamina, Im quite average now.
UpInArms
(51,903 posts)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
(1,217 posts)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
(9,020 posts)SheltieLover
(60,248 posts)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
(1,217 posts)Very glad to have this forum topic on DU!
3Hotdogs
(13,560 posts)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
(1,217 posts)Who she had do her trust, is an expert in elder law. Got lucky there!
Wishing for that sense of calm too!
pazzyanne
(6,618 posts)Warpy
(113,131 posts)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
(1,217 posts)Is quite nice. And 2 miles from my house. Like so nice on the assisted living side Id live there. So that part is good.
Shes so shuffling, like super slow shuffling I dont 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 armscombative is and would never be a thing.
She cant 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 cant get up in any kind of hurry. Really nothing in a hurry. So dont fear they will be chasing her etc.
we shall see. I do look forward to sleeping, my job is demanding, and Im at my function limit.
Warpy
(113,131 posts)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
(1,217 posts)I do expect some of that.
Hope22
(3,101 posts)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 dont 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
(1,217 posts)Very kind a supportive words. & we will decorate the best we can, I have a lot of her things. Im sure I will waffle, but I also know my mom would have reached a point w her own mother, where she wouldve recognized her limits.
My grandmother had Alzheimers & 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 wouldve created the decision.
Hope22
(3,101 posts)Love to you!🙏💗
Laura PourMeADrink
(42,770 posts)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
(160,292 posts)get your mum situated and then you take some time off just for yourself, it is WAY overdue
sprinkleeninow
(20,590 posts)My mom. I reviewed that we could have done it differently, better. No. Her best friend said don't do this to yourselves.
🕯
leighbythesea2
(1,217 posts)My moms best friend (they carpooled to work for 30 years) took care of her mother-in-law. Shes been the most vocal with me that Ive done a lot, enough, etc.
7wo7rees
(5,128 posts)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
(1,217 posts)Terrible disease. Shes at least 10 years in, so the course has been slower than expected. All things considered weve 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
(5,128 posts)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
(1,217 posts)I may have questions for you. Have never really written people directly here, but that would be ok?