Caregiver for husband with advanced Parkinsons, broken hip, 1st stages of dementia. I've been taking care 24/7 for over 6 mths. I have no help, I've been out to lunch twice in 6 mths. Feelings of anger, frustration is getting overwhelming, leaving me with guilt and depression.
I feel so Bad for you. Im new to this role!
I will be taking my mother into my small home in a week. my husband and I will be caring for her... She is blind, 84, recovered from 2 broken shoulders/arms, and leg. Which happened at my brothers home because he left a dehumidifier in her walking path and she fell.
he’s done with her he has announced. Either he puts her in a nursing home (she has no money to support that choice)or I come get her. (She’s in Pa.)(I’m in NY)!
I love reading all the q and a’s!
I love the wonderful support you all offer up.
I am scared.
my thoughts are with you!
Mind you it will be difficult with this virus going around.
You are in my prayers every morning.
* Start a journal / writing is very therapeutic
* All feelings are valid and okay. . . Its how one processes / works through them that is important. No feelings are 'wrong' or 'right' - they just are what we feel and validating / listening to them is listening to our 'self' and our needs.
* Get a therapist / counseling intern to save on costs.
* You are not alone.
* Buy yourself a flower a week as a reminder to 'breathe' and 'let go' every time you look at it.
* Reach out to friends, neighbors.
* Research hot lines to call. There are several nationwide.
* Know we all are giving you a gentle hug here. We know how it is.
* You don't want to go down with a sinking ship. You must learn how to keep afloat. ****** gg.
Ask family and friends if they could donate a few hours once a month then svhedule yourself a break every week.
You could also have a Caregiver come for a few hours to give you a break. If you go online, you can negotiate a price for $10 an hr. You may even find someone for min wage or $8 an hr if you check with Sitters.
You need to do this for yourself.
His Insurance Co should provide a weekly Visits from a Nurse visit,Therapist and Aide for bathing him a couple times a week. Prayers.
Please check with your Church, Family and Friends. I'm sure you can find 4 people to commit to 4 hrs a month so you will have a 4 hr break at least once a week then hire someone once a week.
Prayers
The real answer here is to look for a care facility. We, the "elderly", want to be able to enjoy our remaining years. That doesn't seem possible in your current situation. You've already exceeded your capacity to care for your husband if your experiencing the emotions you state. By the way, you forgot one feeling that you may also be experiencing... hopelessness. Hopelessness leads to despair. Despair is dangerous. You need immediate help and support and you need to make the decision to find a care facility for him. Call the above agencies.
Placement might be a necessity so that you each can have your own life, and so that you can actually be there and present for the person you love in so far as you are able.
Guilt doesn't figure into this. You aren't an evil felon who has done wrong. You are a human with limitations. This is about grief, for what can happen to any one of us, about the limitations we have.
I am so sorry, but you are going to have to look at this without guilt figuring into it. With what is realistic for your life going forward. The dementia won't get better. Learn to remind yourself every time you want to use a G-word, that the proper one is grief. Not guilt. Sometimes things cannot be fixed, cannot be made right. Sometimes we have to do the best we can.
to kick or break something. It’s knowing that you are not angry at your loved one but my revelation came out in the throes of an argument where I blurted out “I love you, I hate this disease”. Then quoted Mommy Dearest “I’m not mad at you Helga, I’m mad at the dirt!” Why gay men always turn to Joan Crawford for strength is truly a phenomenon 😀. We both burst out laughing.
And then came Covid so now nobody is socializing the part time caregiver I had decided to move , and I’m trying to work from home under constant interruptions. I’m regarded as the “go to guy” in my field and have to suppress the desire to tell some whining t*** to p*** off - sometimes I kind of do, but in a nice way.
well, now he’s exhibiting Sundowners and I’m lucky to get 3 or 4 hours of sleep. I have a therapist that I video chat with on an as needed basis, but it’s pretty clinical guidance. I’m not one for social media other than this site - which helps. I’ve done my share of sobbing in the Walgreens parking lot and found the car wash is great for letting out with a primal scream (cleanest car in town).
You need a sounding board love. Don’t be surprised if it is a total stranger - that’s what happened for me, a connection for no reason, just chatting in line, continued in the parking lot and bam, I broke like a dam. I’m not talking sniveling weak chin, it was full on water works - and it felt so good. First time in ages that I felt like someone was listening and that there was no judgment, just compassion. My new found friend had just lost her husband to a massive heart attack and her daughter was killed in
a motor crash while driving down to be with her. Kinda put things in perspective and that we’re no worse off or better off than the stranger in front of you. The pool at her condo is closed so I invited her over to swim, she brings lunch for us all, chats with Ken while I do whatever I have to do I have an escape for a bit.
You’re gonna go to those deep dark places occasionally but remember that you’re not alone - there’s someone that’s gonna show up with a flashlight and get you through it. Admire your strength and own your weaknesses.
now I’m crying I hope my babbling on helps you out
A big virtual hug!!!
D
Depending on your income, you may be able to get "in home" Medicaid. This will get u an aide a few hours a day. As suggested, try your County Office of Aging.
It's so important that you take time for yourself, even if it's just to take a walk around the block while he is resting. My husband was bedridden for the last 2 years of his life with vascular dementia and many other issues, and I would just tell him where I was going, when I had to go out somewhere or just wanted to leave the house. I also had a security camera pointing right at his bed in the living room that I could access from my phone, so I could check on him anytime I needed to.
Please, please, please take care of yourself and look into hiring more help for you and your husband. Best wishes.
If you haven’t yet been able to research local residential sites or full day or part time respite sites, it can be reassuring to know what’s available.
Where is your husband in terms of disengaging from you; does he encourage you to leave him at times during your day, or his he attached to the degree that departures are difficult for you, or does he feel somewhere those two extremes?
You must be a loving, conscientious caregiver to yourself in order to offer your best to your husband, and approaching YOUR WELFARE as a personal responsibility may give you the push to figure out a new kind of balance for you both.
Your situation is understood only too well here. Welcome.
I hope you get some rest soon. It’s exhausting to be a caregiver, physically and emotionally.
Have you checked in Council on Aging in your area? I used them and was pleased. They will do and assessment and then come for four hour shifts to sit, bathe, prepare light meals. They also do light housekeeping in the patient’s room.
Wishing you all the best.
Call colleges for interns (nursing, social work, geriatric) - most have internship program requirements.
Your answer is short and to the point.
And then there are the emotional and psychological aspects one must deal with to get to where you mention. Thank you.