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tbrivers Posted June 2012

Stressed caregiver of a parent. Feeling very overwhelmed

bookworm Jun 2012
I was about 23 years old when my mom was showing signs of dementia. I'm so glad that my dad stepped up to the plate when it became obvious that mom needed 24hr care. She kept walking off and we kept looking for her. We live near the main street and she could've been hurt by the maniac drivers here.(Pedestrians cross at their own risk even if the traffic signal says you can walk. Drivers here don't know what red light means or an ambulance with siren trying to cross over to get to the hospital.) My dad worked for the federal also. He did early retirement in order to stay home and watch mom. I knew he needed help, and so I stayed home to help him..but I still did what I wanted to do...full time job, travel all over, etc...I helped dad so that he wouldn't be watching her 24-hrs a day, every day. My parents have medicare also.

We are currently being helped by a respite caregiver program. Although both our incomes would have disqualified us, I think they take into account the patient's general health and the stress level of the caregiver. I understand that there's a Waiting list for this program. We don't pay anything. They come once a week and provide us with limited supplies for free. They even offered to pay for me to get a massage! No thank you. Instead, I chose a limited $$ for theater movies - no expiration date on the $$.

I was wondering if you might also check if they have something similar in your area? We also have the Catholics Social Services. It's free also. They help the elderly/invalids. They come every day to sponge bath my 2 bedridden parents. Can you believe, in all the years I've been helping with mom, Not Once did I have to shower her. When dad retired, he got busy with the phone. He applied and fought really hard to be in these programs. When they tried to cut back, he fought fiercely, Demanded that instead of cutting back, they should be adding. In the end, he won. CCS was suppose to be only once a week - we get them daily!

The moral of the story, if there is a program, you Cannot just go with the flow. Perhaps, like my dad, you will have to be more aggressive on obtaining these services? CSS also provides both parents lunch from Mon-Friday- except for holidays.

Just to give you an idea of the respite caregiver program..in our area, it was under the University program! They university had a federal funding for studies on the elderly here on island. In order to enrol, you must agree to questions, tests, etc..as part of the study. My dad agreed. And by getting his foot in the door, they also provided the weekly care and supplies and group therapy. So there may be programs there that you don't even know about!

I don't think you should take the bulk of your mom's care. If your dad doesn't want to retire, then you will just need to hire a caregiver for parttime. Then you and dad perhaps work your schedule to watch the other half of the part-time? There has to be a compromise somewhere. Like my 2 aunties told me, mom is not my problem. That I need to live my own life. But I didn't listen - out of duty and guilt (also from my dad). I sure miss the good ole days of traveling......

manipulatedlove Jun 2012
I completely understand wanting to finish your goal. I'm in school full-time now. I'm trying to play catch up, and it's hard. Harder still since my mom makes it so by being so dependent in basic functions as a control method - which obviously differs from your situation a bit but it's hard to do all these things and people just expecting you to lift the world on your shoulders. Mom has no assets so it's literally just up to me since her son has abandoned her.

It's impossible to have your own goals when you're carrying someone else's well-being in your head, too. No one will allow you to make yourself a priority.

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tbrivers Jun 2012
My sentiments exactly! I feel that I have to put my life and my career on hold because of this however, He will get adequate home care for my mom...I was told about this social service in my county that can provide resources: such as an in home-aid, respite and other services funded by county and federal dollars...then my dad can buy a lift chair for my mom and other home modifications. I think he will have to pay something towards the home aid but not in full. We'll see how it goes - then I can feel much better when my mom has what she needs and I can return to college and receive my Early Childhood degree - which has been a goal of mine for years but had to drop out because of my heavy caregiving duties.

jeannegibbs Jun 2012
So, what is your father saving his assets for? Their old age?

You can try to influence your father, tbrivers, but obviously you can't control him. The person whose decisions you can control is you. If your father decides he'd rather keep your mother at home with inadequate help than to actually use his financial resources to remedy that situation, that is his decision. It does NOT force you to fill in the gaps for him.

This is your time to be nurturing your family, and also taking joy from those toddlers who won't be toddlers forever. Now is the time for you to be building (as best you can) a firm financial foundation for your own future. Yes, you love your parents. Yes, you want to honor them and help them. But be careful of being exploited by your father, to the detriment of your children and your health.

Father has money. But he is only willing that his wife should have help if Medicare pays for it or his daughter steps in. And if he can't qualify for taxpayer supported financial help then his wife will just have to do without. I am sorry to be so blunt, but that is what it looks like from here.

My heart does go out to your father. It is not his fault that your mother has all those medical problems. As the spouse of a wonderful man who now has dementia I know how painful facing those "in sickness ... for worse" parts of the marriage vows can be. His situation is very difficult on many levels. I truly feel sympathy for that situation. I'm sure that you do, too. But when he has the financial means to improve at least some parts of the situation but he expects his daughter or taxpayers or the tooth fairy to bail them out rather than use his own money, well, I guess that is where my sympathy ends.

tbrivers Jun 2012
Thank you 3pinkroses for your post. I think that I have more stress because I work with young children - very busy toddlers and then when I'm not with those toddlers, it's my mom who is regressing back to her childhood....it's so tough....

3pinkroses Jun 2012
Just want to say my heart goes out to you - Jeanne had some great advice. Do hope things can improve for you. Wish I had some magic answers. Take care.

tbrivers Jun 2012
Yes, my dad works for the Post office and they own their house and have many assets. Yes, my dad applied for Medicaid on his own - and they are telling him he makes too much money.....so....the only option he sees is keeping her at home. Before my mom went into a facility for rehab, my dad refused to have home care come in (as I've mentioned - he had me to do it all) I do not have an income to pay - and my dad knows that he can - very stubborn is what he is and that puts extra, extra stress on the situation. However, now he has let home care come in as medicare pays for it for 80 days - but like I said - only to bathe her. Thanks for your post you have given much to ponder....

jeannegibbs Jun 2012
News flash: (Well, it won't be news to you, might be to your dad) -- you are not SuperWoman and you cannot do it all.

Why is your mother being turned down for Medicaid? Do your parents own assets? Have a moderately large monthly income? Then they need to use those resources to pay for in-home care, and/or to pay for nursing home placement. When the money runs out, they will qualify for Medicaid.

Poor Dad. He is overwhelmed, too. Of course he'd like for you to be SuperWoman. That is perfectly understandable. Try not to take his complaining too personally and above all, don't let it goad you into attempting to do what you cannot humanly do without great cost to your own family life and your health.

The fact that your dad still works fulltime tells me that he isn't willing to change his preferred lifestyle and stay home to take care of his wife. Why he expects you to take up the slack from his decision is hard to understand.

If there is too much income and/or assets to qualify for financial assistance, then there must be income/assets to get more help -- in home or in a care center. Why isn't that happening. If that is your father's decision, again why does he expect you to pay the consequences of that that decision?

The two times they've been turned down for Medicaid -- did they apply on their own? If so, I suggest they try again with the guidance of an attorney specializing in elder law, who can guide them about the circumstances under which they will become eligible, and advise them about spending down.

tbrivers Jun 2012
My mother has multiple health issues: diabetes, kidney failure, thyroid disorder, congestive heart failure,depression, schizophrenia...hopefully you get the picture. I have been a caregiver for her eleven years and each year it gets worse. I live only a block from my parents - my dad is 77 and still works full time and at night...I have a husband and two sons and over the years, I feel that I have no life and all that I do is work full time - caring for young children while not at work caring for my mother. I am always exhausted and feel very overwhelmed...my dad - well all he does is complain about me not spending more time with her - really? I don't have enough time in the day to do anything and any time I do have for myself - I spend it sleeping. We had my mom in rehab for four months - she had lost mobility - which made it very hard to handle her - and then she had a depressive episode that worsened as well. Last Monday she came home because medicare won't pay anymore - and my dad was turned down twice for medicaid. They have physical therapy and occupational therapy come to the house and get this an aide who comes out 2x a week to bathe her only. My mother was making great progress in facility but now that she has come home, she seems to be having a setback. Meanwhile, I am pulling my hair out trying to juggle it all....difficult already when my dad makes me feel that I am SuperWoman and can do it all...

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