After Caregiving ... More Caregiving?
My husband passed a little over 2 weeks ago. He was only age 63, but had a myriad of chronic conditions that affected him both physically and cognitively. The last 10 months, in particular, were ... rough.
His 92-year-old father (FIL) is in "Independent" Living.
I'm still in shock over my husband's death, and miss him horribly. But life, and its necessities, go on.
My FIL has dementia. He can only move far enough to get himself in trouble. His delusions cause him to get into lots and lots of trouble.
My 2 SILs have taken to staying with him overnight, every night. Nobody's pressuring me ... but I feel I need to step up, too.
That said, the whole purpose of placement seems to have been defeated. And, to be candid ... my Inner Monster Brat does NOT want to sign up for more caregiving. My Inner Adult, however, wants me to get a grip. After all, this is not the full-time caregiving I'd been doing.
What would you do?
You need time to discover what you want in life. I am sure more care giving is not high on your list of priorities right now. This does not mean you are a monster brat. It means you are looking after yourself.
Once you have rediscovered who you are as a single woman, then you can decide who you will share your time with.
A very wise woman told me the old it takes a year to grieve has been replaced by a minimum of a year, but add on one month for every year of your relationship, over 12 years. 30 years=30 months or 2.5 years to find your new normal. It was very true for me.
Your FIL's care is something that his children need to figure out. "Independent Living" is not a suitable level of care for someone with dementia.
He needs a higher level of care and the addition of a geriatric psychiatrist to his team. "Stepping up" is only going to prolong the "propping up" stage.
Please take care of yourself. And no, you're not a brat.
FIL's officially diagnosed with Moderate Cognitive Impairment
(... riiiiiggghhht ... and I just won the Nobel Prize for Rocket Brain Surgery ...).
His facility does have a Memory Care "neighborhood." At the moment both SILs are adamant that any kind of move will kill him outright.
Me? I'm thinking either a move, or a waking nighttime caregiver. Maybe even both. There does seem to be money available. (Hadn't thought about the geriatric psychiatrist. Thanks for the suggestion!)
We lost my MIL on Thanksgiving week, and not only have I just lost a husband, but my SILs lost their only brother, and my FIL just lost his only son. Now FIL, himself, does not appear to be long for this world.
I'm sure none of us are thinking straight at this point.
Maybe you need to compromise and listen to both your "brat" and your "adult"...maybe, instead of taking on caregiving for your FIL, you do a little caregiving for your SIL's...maybe offer to do some of the little things we all wish someone else would take on for us while we were/are caregivers...for example: "hey, I'm running to the grocery store, why don't you give me your list and I'll get your stuff"... or "do YOU, my SIL, need me to do anything for YOU, like laundry, housecleaning, etc."...That they haven't pressured you into helping with FIL, in my opinion, shows such care about you, probably realizing you've just been to hell and back and they don't want to add pressure. If you were to lend them a hand, you could still be "helping" with FIL without getting sucked back in (a terrible expression, but I hope you know what I mean), and maybe that would assuage your guilt for not "doing more".
I hope you can find the peace and comfort you need and deserve!!
(((hugs)))
And, besides:
If your SILs feel the need to support your FIL overnight every night, he may be in independent living but he is not living independently according to standard criteria for these facilities. His care plan needs to be reconsidered. And, so, in any case - no, I don't think you should prop up a rocky arrangement.
I was certain moving my mom, post stroke and post broken hip and surgical repair was going to kill my mom. She thrived and lived for 4 1/2 years there!
What SILs are doing is unsustainable. Don't go there; the sooner they are forced to come up with a better solution, the better.
My mom's Independent Living facility had a geriatrician and geri-psych who had offices on site. Is anything like that available? Also, know that UTIs in elders sometimes present as behavioral disturbances, so pass that knowledge along.
Be well. (((((Hugs))))))
FIL "tested negative" but, Barb ... you reminded me that there is more than one test for UTI; sometimes all of them are needed. (My think is on the blink. No way should that have slipped past me.)
Facility has 24/7 MD access, but I don't know about their geri psych situation. Will find a way to check into that. One SIL may become willing and able to do it.
CM ... I don't want to prop up a failing facade. And yes, my Inner Adult may well benefit from going off on a long hike. Still, it feels wrong to go all Tough Love on my SILs at this time.
I'm very fortunate in that, though we've had our moments, we've become family over the decades.
That said ... *measured* support is probably the way to go.
If you need a long hike, go for one.
Please give yourself breathing room. Accept that you need to have some down time to grieve, to settle his estate, the make big decisions for yourself, before you can expend energy on someone else.
I learned this from one of my mom's geriatricians..."A sudden change in mental status is an emergency and should be reported to the doctor immediately".
Delusions are never normal, but when they show up suddenly, the cause should be pursued. If a doctor was informed about delusions, ordered a perfunctory urine dip stick test but went no further, then FIL is getting rotten medical care.
Hospice is another service that might bear looking into.
FIL is already in hospice care, but said care seems scanty to me. Again, up 'til now I've been too preoccupied with my own household to be sure.
Will see if I can learn more after sunrise.
Thus far, no one has pressured me to step up ... but it was made clear that my doing so would be welcome.
So sorry for your loss.
I'm planning resuming hands on caregiving for my LO soon, but, I would not consider it if she was acting out, having delusions and difficult to control. Have they tried medication to help him? If he needs a level of care that requires someone staying all night every night, then, what happens during the day? It sounds like he does need a higher level of care 24/7.
I believed Confounded is absolutely within her rights to take the same approach.
My SILs are overwhelmed with FIL's care. One of them is freaking out. She doesn't pressure me, but her pain does reach me.
I love them all, but now I realize it's too early for me to take on a new "client." Especially one with deep cognitive deficits.
Although the past 10 months with my husband were the most difficult, I've had to "think for two" - at least to some degree - since his first stroke in 2011.
Time to start thinking for one ... and frankly, I no longer know how (if I ever really did).
I will support them as best I can ... but ... I do believe I've joined Team Monster Brat.
Many thanks to you all!
I am glad to read that you are not signing up to be a caregiver for your FIL. You deserve to have time to deal with your loss and circumstances. May God bless you with grieving mercies and strength during this difficult time.
And don't feel guilty!!!
Wishing you the best of luck creating YOUR new life after the sad loss of your dear husband. There's plenty more things for you to get involved in now that you have free time. Please do so, without calling yourself ugly names in the process. There's no point in doing such a thing!
Did your SILs help you when their brother needed caregiving? I would be prone to doing the occasional casserole run if yes. If no, I would not respond to any direct or indirect guilt trips. Change the subject. They’ll get the hint.
Take your time to grieve your late husband. My heart goes out to you.
Yesterday, I did go and relieve my SIL for about an hour. (... I know ...) He needed an eye on him at every moment - by which I mean, can't dare look away at all. He kept trying to get out of bed to see to "house repairs." He's skin and bones - mostly bones. "Meals" are sips of thickened Pedialyte. And yet ... and yet ... he could still tumble out of bed and crawl into trouble.
I know SIL wanted me to stay longer ... but I couldn't. I was glad I went, but I'd reached my limit, and didn't dare go past it.
Today, SIL told me that a hospice nurse will be there 24/7. I don't know if hospice would have assigned one earlier, but it probably should have happened at least 2 weeks ago. Bed alarm is also finally in place.
My SILs and, when they can, visiting nieces, still plan to stay in his IL apartment on a 24/7 rotating basis ... but that is likely to be a very short-term affair, and it is now entirely a matter of choice.
I will support them as I can ... but now I have more head-space to focus on home/estate affairs, and on my own future beyond caregiving (as much as COVID will allow).
Many thanks, again ... to all of you!
A hospice nurse with him 24/7? I've never heard of that but if it's available, that's great.
He's not rich, but he is financially fairly comfortable.
There is a lot of legal issues with caregiving: POA, estate planning, and meanwhile you are getting older. If you can retire that's very fortunate for you but if you can't--start worrying about your OWN survival. That is what "life goes on" is all about--the BILLS keep on coming in.
Your FIL has his own children...let them take care of it. If anything to avoid legal difficulties against you.
10 mos of caregiver mode is quite a bit of time. You may be surprised to find how tired you really are. Wait for a time after you get your own personal life back in order and feeling stronger to offer whatever help you may offer. Maybe 1 night a week or 1 night every other week. Or maybe just to run some errands for him. You could offer off-site relief as in paying bills for him, managing his mail, or other paper work. Just remember what ever you offer, step in slowly. Don't commit to something that may overwhelm.
So yes, she SHOULD take time to regroup, not jump into the pool again. Some minor assistance here and there, but primary focus needs to be on getting her feet on the ground again and stabilized!