Hi, I have been caring for my elderly father (83) for around 8-9 years. Recently these last few years his health is declining. His had several falls, his breathing is not good due to being a smoker most of his life. He has emphysema.
The last few years have felt more and more demanding and challenging. Covid seem to magnify any existing problems. I have not really been able to do much of anything for myself durning these last 4 years.
My question is what should be expected from family in terms of support. I have reached out many times out of despair and frustration hoping for some help or understanding. The response is always well wishes and kind words, but nothing in terms of action to help at all.
Recently I have had to speak plainly to them about our fathers health condition and frustration that comes with it. Yet I'm still meet with indifference.
Is this normal? Have I expected too much from them?
My husband shakes so much he cannot feed himself without spilling food and drink everywhere and he falls numerous times a day. He cannot control his bowels or urine and won’t wear a diaper except sometimes at night. He refuses to admit he has dementia and when I try to tell the Drs about it he says I’m exaggerating because I want to have him committed and insults me in front of the Drs. It’s frustrating and I’m very tired. The past year has been hard on us both. I’m starting to have more diabetes issues and my pain from fibromyalgia is becoming more difficult to manage.
So that’s my poor me rant for the day. How can I get any help from Home Health Care if he refuses to admit there are problems?
i am waiting for his home to sell in the meantime I alone am paying for his memory care. I am feeling stressed and overwhelmed.
This was one RARE & unique family INMO.
I think myself lucky to have a caring family - yet no share-care will ever happen. I am realistic. Staff are needed.
Not just this solo duck 🦆
Most families meet this hurdle - involving NON family.
"Together we can do, what we could never do alone."
Your family's minimal help is entirely normal for many families. Not what you might wish for, but normal.
tag you’re it..
yup , been there fine that, and my friend is going through ghat now. She’s realized, knowing her siblings, that she is it, nobody who can actually step up to the plate is offering their time. She’s it, so she’s planning accordingly. She realizes caretaking fir mom is 24/7 obligation. She had her family too. So she’s in process of hiring a caretaker so they csn take shifts..
it’s okay to seek help. It’s ok to ask the family.
Are you POA for health snd finances? Is there a living trust?
My friend was slso going to pay any sibling who offered to help take care of mom…
Silence…..
I would say that your situation doesn't seem uncommon. Sad, but true.
If you continue to take care of your dad then do it for him and also for yourself. Some people feel really guilty about not helping and others don't feel any guilt at all.
My wife's sister told her "You take care of mom and I will take care of dad." This was based on what she perceived the relationships were like. She was closer to her dad than her mom and assumed my wife was closer to her mom. Maybe there was even some truth in that. What wasn't true is my wife agreeing to that arrangement. It's just something her sister pulled out of her behind.
Flash forward and while dad is a little older than mom he is doing much better than she is. He doesn't need any care at all and he lives in another state across the country. (They divorced decades ago.) The daughters rarely visit him. Mom on the other hand requires much more care because of her dementia. Somehow my wife's sister thinks that this is my wife's problem because of this arrangement she had in her head.
We stopped caring for mom a few months ago and hired a caregiver. Sister still thinks that somehow we are handling everything. I mean, she knows about the caregiver but she thinks we are still involved the way we were - and not for lack of informing her, or trying to anyway. Well, we're not. When something finally happens to mom because of neglect I'm not going to feel guilty about it and my wife won't either. Maybe her sister will, but maybe not.
Do what feels right to you and helps you sleep better at night. Don't worry about what anyone else says or thinks. If that means you take time for yourself then do it. If not, then that's your cross to bear but you don't owe anybody anything.
tell his doctor you need him evaluated for PALLIATIVE CARE or Hospice.
ask if he can be placed in a rehab facility for a week so you csn get a much needed break from caregiving.
or… HI siblings..
I need to leave for a couple days.. what day is best to drop off dad? I will pick him up in 7 days. Thsnk you.
I'm suspecting that the issue is that you are not specific and exacting enough. If they are not connecting -the-dots, it could be that they truly are clueless about what you are going through or they are scared to do what you are asking.
So, I'd start small...Did you get your flu shot? Dad needs his flu shot. I need you to take him for the flu shot. Do you need me to make the appointment for you? Where would you like to take him? (make sure you hand them the handicap tag for the car if you Dad has one) Dad needs his haircut, can you take him for his haircut?
Now if you are asking for them to take care of him overnight, that is huge!!! It would be better if you found respite care for your Dad so that you could take off on an extended trip. This is especially true if they have not been involved in any lengthy caregiving session with your Dad. After you find the prices, discuss it with them. If they don't want to take him in, then your Dad goes to respite care.
Its tough for you and well as for them.
I disagree, OP’s inactive family don’t have it tough. They are going about their lives as usual .
I did my caregiving at age 28 and I’m done. DONE. Never again, and now I’m in my 50s.
Other people know their boundaries and what they are and aren’t capable of doing.
How did you end up in this situation?
After an argument with him & him telling myself & my family how he wanted things done because he had POA & that he had control & that my mom’s affairs were none of my business I stepped away & told him he could handle everything from then on.
I would never again care for anyone without POA……..lesson learned the hard way.
To CaregiverGer, Having POA does not mean you do the physical caring. Does not mean your at the persons beck and call. Its a tool to help them when they are no longer competent to make informed decisions. Gives you the ability to pay their bills and handle financials. Gives you the ability to place them in Care. The Ability to sell their home so they have money towards their care. Medical POA allows u to talk to Drs and Nurses. To make sure the principles wishes are carried out.
It cannot be stated often enough that siblings are under ZERO obligation to do much, if anything. I do think, though, that those who exercise their right to remain at arm’s length should wisely refrain from offering suggestions and advice to the one who has actively, consciously chosen to become overly involved. And, indeed heartfelt thanks are due. But that is ALL that is “owed.” If you are sick and tired of fooling with this, for Heaven’s sake, put him in a facility -on his dime, or Medicaid’s.
You have to take care of yourself as well. Nobody should be forced into servitude . You don’t say but I’m assuming you have POA. POA makes sure someone is taken care of . It does not mean you have to do it all . Hired help using Dads money can come in to give you respite , or if Dads care is such that intensive , place him in a facility . Is Dad competent , can you talk to him about needing to hire help ?
Keep coming back here for more suggestions as things unfold and you are trying to navigate getting hired help for your Dad of placing in a facility , depending on what/when you decide .
And if the principle is impoverished, that's where Medicaid comes in.
So I decided for my sake and sanity that this would not all fall on me. I got out of hell, and I'm staying out of hell. People will take, take, take to make their lives easier, and don't care about yours.
I think if you step back, maybe someone else will step up?
I understand your frustration, because I felt it, too.
All I can say is God sees everything. A nurse for my father spoke with me about my family dynamic and she said "please don't worry about what's going on now with your siblings. Focus on your father's care if you have to outsource because other family members won't step up so be it. I have been a nurse in the geriatric field for over 30 years and I don't believe in karma but what goes around definitely does come around. She continued, I've seen it every time. Your siblings will see the error of their ways."
This helped me, not the karma part, but knowing others have been through this. It's hard. That conversation gave me the impetus to put out to my siblings that Dad needs help. If they don't respond in anyway and by a certain date, I bring in the agency. I only do what I can do.
I have grown a very thick skin and let their excuses of why they can't see Dad roll off of me.
The one thing I don't understand is can't they atleast say thank you for all I have been doing! Selfishness at it's height!
My experience was they were happy when I was doing everything and didn’t have interest in what exactly my parents needed. When I had to put my mother ( a year after Dad died ) in a facility , then they were interested , had suggestions , and criticism , although none of them offered to take care of my parents in lieu of placing them in a facility .
I have never figured out how all but one of my siblings thought they could demand I continue being in servitude and not offering to help at the same time . Even my sister in law got pushy , agreed with the rest who said I should have quit my job , left my husband and teen daughter and moved in with Mom. I couldn’t have Mom live with me , no downstairs full bath , mom could not be home alone and refused any hired help coming into the house . Ironically that sister in law placed her own mother in AL about a year later .
Good for you for growing a thick skin . I never complained to my siblings nor asked for help and had to go mostly no contact to deal with the criticism . It was hard enough dealing with a narcissist with dementia .
I don’t understand the selfishness either , except , I don’t think they realized how much I was doing , because they’ve never done it. When my father died from cancer for some reason they talked about how “ we took care of him “ .” We “did not take care of him . All they did was visit him occasionally . This was at the house after the funeral . When my mother died I only saw my siblings at the wake and funeral . I skipped out on the post funeral food get together and fictional story telling .
I can sympathize with your frustration. I want you to look at the other side of it, though.
How did caring for your father come to be "your" job? Did you step in during an emergency? Move in when your life was in transition? Decide unilaterally that dad needed help?
Sometimes folks paint themselves into corners. They get in to trouble and yell for help. No one shows up.
Your family isn't going to show up for dad until you change the situation. By not doing the caregiving any more.
In the end, a decision will need to be made, by dad if he's competent, by his POA if he's not, about what level of care is needed and how it gets delivered and paid for.
We are here to offer advice on how to change this situation if you want to do that