NeuroTalk Support Groups - Carer concerns ~Suggestions *

I've been primary Live-in Caregiver for my eldely parents w/ terminal illnesses for 5+yrs. Mom died last year, now it's DAD & I.
committed to keeping him at living in his home. Both parents had been in & out of hospitals & nursing homes--even the Best --aren't :home.
but many days i do question if wouldn't be "better" --care--than I provide. esp. on days I struggle w/ my own medical challenges.

Today was one -- after another nite not sleep -due to my pain & neuropathic disorders, had full blown debilitating migraine w/ body wide pain , swollen joints &general dysfunction. I couldn't move --but eventually was able, to tend to father's morning needs.

Dad -a sweetheart--very patient, mentally alert but non-ambulatory; once we get him transferred to his motorized wheelchair, he's mobile but still dependent on me for most of his daily needs--personal hygiene, toileting, grooming, meals, meds including insulin & blood glucose checks
None of these are that difficult but can be challenge for me due to my med issues.some familar to him like Neuropathies,which, w/ joint swelling & pain - make simple tasks difficult.

I feel very frustrated w/ my self & conditions esp. on days like this when I feel so sick that I have to go back to bed , until dad buzzes on intercom that he needs-- to go to bathroom, or it's time for his meals, etc.

I don't like leaving him alone as much as I have been . My conditions were exacerabted by head injury 6 mths ago that resulted in Post Concussive syndrome. I'm doing much better now, but for past months retreated to my bedroom in between "chores" & needs. too affected by syptoms of PcS --that included constant headaches, sensitivities to light, sound (my dad's very hard of hearing --Tv blasting ) just interractions could trigger --emotional, perceptual ,Cognitive & more dysfunctions-- hard to explain.
-- slowly resolving, I'm doing more, but set backs, like today are more from other med issues than PCS. I was doing more, handling responsibilities , much better before last TBi. Last months have been very difficult .

Last year much grief & saddness, after years of much loss for all of us.

Caregiving--- has so many faces, layers, aspects.

Tho my father mind & brain may be better than mine, perhaps his awareness also makes it more difficult for him--dependent on his daughter (who's also "sick") he feels he's a Burden. to me NOT.
I want to do for him, much more... I want him to be at his Home, wish could offer more to him, esp. now that his wife/Life partner is gone. I know he's lonely, rarely gets company (tho he had Lots of friends, extended family--don't understand why they've abandoned him now except that it may be hard for them --to see, accept reality-- or they have other priorities --busy, etc. I don't know but it's sad....

WE -my parents & I - shared quality time --being together, talking , discussions inc. those difficult subjects --last wishes, final arrangements... I do want to address this more, how important these conversations are, as well as things others can do to help caregiver....

I get Lost in my thoughts often, even before TBi ; I'm rather isolated.
It's basically DAD & I now. We enjoy watching films together--foreign, indies, documentarys & more-- and discuss, critique. We try to eat well, when I can/do cook. otherwise we depend on Meals on Wheels.

**
*Meals are one thing that others who want CAN do to help-- people may say "If you need anything let me know".. but short of emergency most of us [Carers] aren't going to ask--- but sure would appreciate.
I've heard about groups-church, family, friends-- who make arrangements to take a hot meal , once wk, month, whatever... usually portion of whatever they've prepared for their family meal- & take to home of sick, disabled, shut-ins, or even post partum new mothers.
or frozen meals, that can be used later, as needed..
Local "tradition" is to send food to home after a death. While this is nice gesture, I've seen too much food arrive at once, more than can be used. This offering may work better by pre- arrangement (best times, etc) and speaking w/ family RE: any special needs, food restrictions, allergies, etc.

*** another suggestion for those who may want, but aren't sure how, to help-- offer to "sit" , spend time w/ person to give Carer a break. This also gives person ["patient"] a break from Caregiver!! Respite is needed.

Some agencys do offer Respite as well as Caregiving/ aides, etc. This is usually private pay but are some programs (state gov. Waiver, VA, etc.) that will cover costs.

We have had aides--private hire & from agency programs. come in few hours week to help. but difficult to find good, honest reliable competant people who don't create or bring problems in. we've had many problems & just went thru another, last week. Too much to get into now, but others may be familiar w/ problems w/ "help"
.
We also had hospice --for both parents at differnt times. Hospice is good--for palliative care but learned that hospice may not be for all. We didn't know that Hospice "replaces" Medicare as primary insurance. They get paid lump sum. Hospice also didn't expect my mother to live that long & she was "discharged".
Hospice experience w/ my father was complex; did provide more in home help esp. Nursing. but he too was terminated after hospitalization --surgery for central lines & suprapubic catheter.
This Hospice told us [family] we didn't have enough "support" in home for them to continue providing services. (i thought that was Hospice's purpose--to provide needed support & services but.....) Dad had to go to Nursing home where he not only recovered well, but got intensive OT & PT-therapists (along w/ his determination & strong will) transformed him from bedridden as he was previously in home w/ Hospice---to able to assist w/ his transfers to wheelchair, toilet, etc.

So there is Good that's come out of being in Nursing Home but at this time hope & pray my father will be able to remain at home.

I'm rambling...on more than intended but....

Issue ~focus on quality of Life
guess that's why feel better for dad to be home; tho I wonder about care, do tend to his needs, but often many things, get put off. I'm coming from so far behind w/ house, chores, even "business"... my priority : father's needs, as long as tended & my med condition does not worsen won't have to make that call-or decision RE: nursing care home. tho there are days, moments I question it, somehow find ways to do, what's most essential. Caregiving.

& advocacy --medically & other ways; while seek help for my self so I can continue helping him. He's don'e so much for me, & others. want to do more, hope I can ... pray I will.
Prayers & blessings to all... Carers... and Loved ones... it's challenge --fueled by & for Love.

Blessings, to all