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.

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Sweetie, firstly, don’t think that your feeling angry is wrong - you have every right to that anger. I don’t know a caregiving spouse that doesn’t want
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!!!
Helpful Answer (19)
Reply to caring4ken
Momsonlychild Sep 21, 2020
Your words were both helpful and humorous 😊. Humor is definitely something we all need. I’ve been my mom’s sole caregiver for 6 years. My husband & I have had to move in with her as she can’t be left alone. I, too had quite a breaking point a week ago, said things I shouldn’t have and raised my voice. But I’ll tell ya this a 500 pound weight was lifted. After crying for what seemed like forever I noticed how much lighter I felt. We are all simply humans but are expected to be super humans. This group gives us all a little break, to help one another, grieve with each other and yes add a little humor that only a caregiver can understand. Hope your week is a great one!
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I think it is important for each of us to understand our limitations. I personally could not do caregiving in my home. I just couldn't do this 24/7. I was a nurse. This is not at all like taking care of a family member, is well paid, and there are 16 hours and 2 days a week off.
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.
Helpful Answer (16)
Reply to AlvaDeer

You deal with the feelings of being overwhelmed, angry, and depressed by getting help to relieve you of the uninterupted care you're giving, and you deal with depression by seeing a psychologist and getting meds for it. To see a dr. you need to get out of the house. That means addressing your need for help and respite first so you can see a dr., go out to lunch, or just get away. I understand anger and frustration, but why the guilt? What have you done wrong that you now regret? (You said you've never had a good marriage relationship so that doesn't count!!) Caring for your husband is OJT, there is no manual for it. You take it day at a time and give it your best shot. You can call your Area Agency on Aging and/or your state Dept of Aging . They should be able to direct you to some home care agencies who you can hire to give you time off.

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.
Helpful Answer (11)
Reply to sjplegacy
TouchMatters Sep 21, 2020
A person could possibly see a therapist 'intern' for reduced fees. Most people do not need a psychologist. At most, a psychotherapist is well trained / licenced. Calling County social services may have leads. Otherwise, a person can re-search schools offering Masters and Ph.D programs to see about getting an intern. Much cheaper. Interns need up to 8,000 hours to get licensed. And, they are supervised.
No one can be a caregiver 24/7 long term without destroying their own health. You need to either hire outside help or put him in a facility.
Helpful Answer (10)
Reply to ZippyZee
TouchMatters Sep 28, 2020
Call any and every social service agency in the county.
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.
* Keep writing here. Get it out.
* 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.
Helpful Answer (8)
Reply to TouchMatters
Anche71 Sep 21, 2020
I like your advice of buying flowers! I will do that myself!
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I’m so sorry that you are struggling. It’s natural for you to be sad. It’s so hard watching people suffer with Parkinson’s disease. I cared for my mom for many years with Parkinson’s disease.

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.
Helpful Answer (7)
Reply to NeedHelpWithMom

You are human, fatigued and depressed. No one can keep up with the schedule you have managed. Be kind to yourself and get some caregiver help. Even part time would be a blessing. Remember your feelings are your own and you do not have to apologize for your emotions. There is some wonderful advice below. We all care about you and your health so please listen. Husband has health issues that will not improve.
Helpful Answer (6)
Reply to InFamilyService

Mountainbird - from your profile, you stated that you're 73. Taking care of a bedridden person is very difficult even for a person younger than you. You can't continue doing this. If you do, you will really do physical harm to your own body. How old is your husband? Are you financially able to pay for someone to come a few hours a day to help him so you can get a break?
Helpful Answer (5)
Reply to polarbear

Sounds like it's time to bring in some more help, either in the home or a nice facility, so you can get back to having some "me" time. Why haven't you hired any outside help yet? You don't want to be in the statistic where the caregiver dies before the one being cared for, do you? If you keep on the path you're on, that's exactly what will happen.

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.
Helpful Answer (4)
Reply to funkygrandma59

You may need to consider placing him. Before you do that, see a lawyer versed in Medicaid to have your assets divided up. Medicaid allows this. What happens is his portion gets "spent down". This can be done with placing him and when his half is almost gone you apply for Medicaid for him. You remain in the home and are allowed a car. You will be given enough money to live on. All his needs will be met and all u need to do is visit.

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.
Helpful Answer (4)
Reply to JoAnn29

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