How to find help for a family caregiver?

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Hi All,

I posted recently that I was concerned for my mother's health. She is my grandfather's caregiver and receives very little to no help from her four siblings. My grandfather is blind and requires assistance to complete daily living tasks (bathing, eating, using the restroom, etc.). Tonight, I got a call from my mother who was crying very hard and was terribly upset. The family is against her boyfriend of three years and they use him as an excuse as to why they don't want to come over and help. My mom's brother had a heart attack a week after their father got home and his wife said she would punch my mother in her face if he had another heart attack because it would be her fault. Her brother said that my mother was being selfish for wanting to leave 'all the time' and he said that when grandpa moved home, she was the one who said she would care for him. I could go on with details and if you need more, I can provide them... however, I want to know what I can do for my mom. We talk every day, multiple times a day and I let her vent. I go over and sit with grandpa when I can and my husband is great at understanding this. However, I am very, very concerned about my mother's emotional and physical health. Her family situation is very toxic for her health and I'm worried about what measures she may take to 'get out' of her situation. I have asked her what I can do for her but all she says is 'nothing'. Can I be the one to call the Area Office on Aging to see what resources are out there? Do any of you know or have experience in this situation as to what I can do or where I can go to get help for her. Has anyone had any help from support groups? Also - if anyone else has been in my shoes as a daughter of a caregiver, I would appreciate any and all advice. I don't know what to say or do for her anymore. I know this situation is a little different from everyone else's on here, but I'm so lost. I want to help my mother get through this but I don't know to handle the situation or even the right words to say and the right things to do. I really appreciate all of the advice from you.

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Everybody has great suggestions, but as for family counseling, it would be a waste of time in my mind. Cut the brother & his jerk of a wife off first of all. Forget that there are siblings. They have shown just what they will do - nothing. As for you, as you said that you help out when you can. How about taking one weekend per month and sitting with Grand Dad or better yet taking him to your home. My kids do that for my mother who is blind and needs help bathing, potty etc. We all benefit. Mother gets a change of scenery, I get a day off in my own home and the kids get to know their grandmother. Set a schedule that you can promise to come over and help. Do you have a career? Are you a housewife, mother? It may not be convenient and you or your husband, but this is down and dirty, life or death for your mom. The proverbial house is on fire and you are throwing in an occasional bucket of water. can you do more? If not, can you pay for help for your mother - even one day a week? There's a great website care.com that has great resources of sitters, nurses, etc.
The VA aid and assistance for veterans is excellent, Cleverdish gave some tips for getting that done. Talk to a lawyer about a trust with all your grandfather's assets & home in a family trust and your mother as trustee. The trust, if it's done right, is not considered assets or income by the VA.
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Is your Grandfather a VETERAN? Do not call the VA: they will tell you (as they have told me for years) that nothing is available. Go to the local VFW and ask for their service officer to help you apply for Aid and Assistance for Grandpa. Over a grand (yea one thousand dollars) or more PER MONTH may be available to your Grandpa for in home services. Also contact your local Home Instead folks or Senior Helpers- these are franchises that are highly regulated and good options. Also- your state Elder Options (here in Fla) has a myriad of confusing yet helpful options should Grandpa qualify. HELP MOM APPLY FOR EVERYTHING and keep on it. Call back. And call back. And call back. (I'm here in Fls- Mom is 92 1/2...on the wait list). There's also Medicaid, and DCF which have all their own applications. To further confuse, there's the Medicaid share of cost, and the Medicaid Waiver, which all have different applications. Are you or your family: Wesleyan, Baptist, Pentecostal, Catholic, Lutheran? EACH denomination will have: elder care homes/day cares/respite care. If Grandpa can toilet by himself, usually that's the ticket in. I'm in the same boat. My Mom was saving money (unbeknownst to me) to visit my brother across country. She has $3,200 AND THAT'S OVER LIMIT! HAVE MOM DOCUMENT EVERYTHING PURCHASED and get the numbers down for Gramps. Get a notebook. Make calls. Keep everything in that notebook as a daily log AND KEEP ON IT. The squeaky wheel gets the grease. God Love You and your Mom- I'm wearing here shoes right here right now six years. Getting weirder than weird and I'm a tough cookie. Keep in touch with us here and let us know how it's going. (PS: PRE-ARRANGE FUNERAL and/or CEMETERY if you choose burial instead of cremation. Irrevocable is the term you need to employ.) Hey- I'm in west-central Florida here- there's a lot of help out there to get those applications in THAT WILL NOT REQUIRE $$$ for consults. Keep in touch.
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I'm sorry to hear of your mother's issues with her siblings. I would like to recommend the assistance of a Geriatric Care Manager (GCM) (Aging Life Care Professional). A GCM can guide your family and help with local resources. They can also counsel the family and abide some peace and reassurance. There also may be programs and/or services available at low or no coast which a GCM can set up for your grandfather/mother.

Good luck to you all. You are all in my thoughts and prayers.
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Unfortunately, I agree. As the sole caregiver for my father, I suffered very severe health problems as the direct result of the stress. And I believe I am at least a decade younger than your mother. Trust me, it takes a toll way faster than you'd expect. And then the stress will also roll onto you for worrying over your mother.

I, too, wanted to keep my loved ones home as long as possible, but sometimes you just can't do it. And you may even find later that this is also the best solution for your grandfather and he will be happier and healthier. But I understand. It's so hard.
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Yes contact your county agency on aging for programs such as Case Management, Meals on Wheels, Adult Day Care, housing, care referrals, etc,... go to the website link below.... click on your State.... now click on the city/county. https://www.agingcare.com/local/Area-Agency-on-Aging
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Who has the POA. I think its time to put her father in a care facility. This is too much for your Mom. She needs to tell her siblings that caring for there father has gone beyond what she can do.
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Hi irishrose. First, I want to echo your first two responses. From my experiences, they are right on track. Second, you need to know that you and your mother are not alone, even though it will often feel that way. You are so wonderful for trying so hard to help your family, as is your mother. But don't try to go it alone. Been there, done that, was awful.

Almost three decades ago, my late mother was caregiver for her mother. My mother was the eldest of ten children and she was the only one to try. And yes, she got all kinds of crazy responses from her siblings. The best we could do with that was to tune them out and not expect much help. Finally, after a long, grueling time of caring for my grandmother, Mom's sickly brother and his wife and children decided they would move in to be the caregivers. It was one of those deals where he was one of the pet children so all was grand and 3 months later Gram passed, they were the heroes, all inheritance and the house went to them, and no thanks to Mom.

Why am I relating this to you? Just to say, from the way your mother's sibling(s) and families are already reacting, I don't foresee their aiding you much in the future. I hope I'm wrong.

I might even suggest checking with a lawyer if financially possible to make certain of your legal status. I also hope your grandfather has a will and living will. In the event that he would have to go to a nursing facility, this would probably have to be in place. The other thing you probably should check into is having a Power of Attorney drawn up if your mother insists on being the caregiver.

Anyhow, I learned from my late mother's trials and, when Mom developed Alzheimers, I went for every Social Service I could find. I have to say that our Office of Aging here in eastern Pennsylvania has been amazing. They have helped set up and defray costs for visiting nurse visits, social worker visits to assess the patient's physical and emotional needs, COUNSELING for me (huge help as stated above), and just the knowledge that I was not totally alone in this sad and demanding time. They also helped us get a Life Alert type of equipment without charge.

But, don't wait. Get your grandfather on the Office of Aging list right away because there often is a waiting list.

Another huge help was our health care provided who provided us with a go-between person to contact. She would help keep track of all health issues and meds and would be there when we went to the doctor, sort of an advocate although she actually worked with our Medical Clinic.

We also found a wonderful pharmacy who was helpful. It may not seem like much, but they made life at least a little bit easier by automatically checking and renewing Mom's meds and even delivering them ($1.50 charge per week) in special blister packs so that she would get the correct medicine at the correct time, without having bottles all over the place and trying to remember if and when pills were taken. It was just one less thing to remember.

If you can, find any relevant cards needed for you Grandfather. Social Security, Medicaide/Insurance cards, drivers license for i.d. even if out of date, a card from his doctor's office with the doctor's name and phone number, anything you might need when you go to a doctor, social worker, hospital, whatever -- put these on one page if possible and make several copies. Keep one with you at all times. Now when there is an emergency or just an appointment, all you have to do is hand it over. I have large envelopes for each of my family members with that info and anything else I might need and it sure saves a headache for not having to look for things. I also took the labels off pill bottles and laid them on the copier to create a page of current meds for each of us.

My father had strokes after Mother passed and now has vascular dementia and I have Office of Aging and Social Services involved. And now my husband has just been diagnosed with early-onset Alzheimer's and I am calling Office of Aging to get him enrolled, even though he isn't eligible for services for 6 more months. But at least he will be in the system.

I hope you will be able to get some help from some of the places we have mentioned.

Good luck, Irish, and prayers. Love you.
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"The wife of her brother said it was your Mother's fault if her brother had another heart attack and that she would punch your Mother in the face?!!!!" In your post, that's the first thing that jumped off the page, saying DANGER, DANGER, DANGER! She needs to get a restraining order against this woman. And it wouldn't be her fault if he had another heart attack-heaven sakes you said they, including the brother, give barely any help.
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Find out about your local area on aging. There are several caregiver support groups going on each month that are available, & they are free of charge. I have attended one for a year now, & I find it very helpful. You will find resources there and wonderful people who can directly relate to your situation. There is also a healthy amount of laughter and humor!
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You sound like an amazing daughter!! I know right now you are super concerned so I would suggest that YES you call your area office of aging. But honestly in FLA it was not super helpful and there was a long waiting list to get govt help. I was a caregiver...so I know it is different...but first I got some mental health counseling so I could cope better. IT MADE A HUGE difference....I could not change the situation but it changed how I reacted! It helps. So work on getting your mom some help that way. Call your house of worship and see about getting your mom some respite care. Again I didn't not have much luck here, but I found some older ladies who needed some money on care.com and sitter city..they were less expensive than nurses and were amazing...they gave me breaks to get some rest and recuperate. I don't know your financial situation but your mom needs to talk to an elder care attorney to find out her options financially regarding help for your dad...it sounds like this situation may be getting beyond her abilities...And I KNOW she will not want to face this but she needs to know that her dad would want her to live. I don't know how long your mom will be in this situation--but she needs to survive it! And that means being the wonderful daughter she obviously is.....but taking time to preserve her health and sanity. Her dad would not want to know that his daughter became ill caring for him. This is a great site..and helped me from having a breakdown last year!! My mom passed Thanksgiving and now I am getting married. I thought I would never make it thru last year.....but I tried to make the right steps--that helped my mom and got be to survive and live to enjoy life again. HUGS
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