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Father, caregiver stressed taking care of grandmother

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Alzheimer's Disease
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Posted 6/19/2014 6:21 PM (GMT 0)
I am unsure what to do, this may be long, but help would be much appreciated, I'm so worried.

As for a backstory, I'm 17 years old, just graduated high school, my father is 44 years old, and my grandmother is 78 years old.

My grandmother had a stroke about 6 years ago due to built up stress and lack of medicine because one of her sons passed away (she has two sons and a daughter, one died, my father is the other son) SO the son that passed away's kids were put under her custody and her new (adopted?) kids hounded her for money and called her every night begging for it, she ended up giving them money and not buying her medicine, getting stressed and stressed without medicine she finally had a stroke, and guess what, they don't even come see her or call her anymore.

Ever since she had a stroke, she couldn't live on her own, she started living with her daughter (my aunt) for two months, and my aunt couldn't handle it she said, and WE (my father and I) took her in.

My grandmother has been living with us for almost six years now. Things were fine the first four years, the past two, have been complete hell.

The WORST part of it is, when she doesn't sleep. When she doesn't sleep, she gets SO confused, she keeps imagining my father as a child thinking he's going to school, asking where he is, forgetting where she's at, becoming spiteful and mean and argumentative when you try to tell her the truth.

My father's name is Brandon, she always asks "Where's Brandon?" My dad will say "right here, I'm Brandon" then she replies "No not you, little Brandon, the other one." It drives him insane. Then she thinks my father is one of her brothers and accuses him of crazy things and even walks into his room at say 1-4 in the morning and wakes him up asking where little Brandon is and to take her back home (Even though she's been living here for 5 years) and when you tell her differently by telling the truth she calls you a liar and screams and cusses at you being completely rude and spiteful.
I don't know if that's early or escalating signs of dementia or Alzheimer's or what.. But it's really draining us. I don't want my dad to keel over from all this stress or have a heart attack or something... My parents are divorced and he's all I got. Nobody in my Grandmother's family comes to check up on her or help with her bills or anything.
She doesn't make enough money each month to go to a retirement home either, she makes about 800$ per month WITHOUT putting in the costs of her pills, diapers, food we buy her each week, AND NOW sleeping pills that rarely seem to work.
If we don't give her sleeping pills things become complete hell and she gets confused and insane.

Can anyone please give me advice what to do about all of this? It would be much appreciated.. I just miss my old grandma.. She's not herself.. far from it, especially when she doesn't sleep...

Thank you anyone who attempts to help, thank you very much... Sorry it was so long..
Posted 6/19/2014 9:09 PM (GMT 0)
I'm so sorry to hear that you and your father have to deal with such a difficult siutation. I can't even begin to imagine the stress you're both going through. I have no experience with this illness. I'm sure you will get responses from Healing Well but I would strongly advise you to post your message in alzconnected.com. CLICK "From The Message Boards. CLICK "Caregivers Forums". Then post your message. You will get all the advise you need. It would also be beneficial if you mention the State you live in. Those who post frequently in the Caregivers Forums are going through what you're going through and understand this illness.

The reality is that she needs professional care which means a Nursing Home which is covered by Medicaid. Good Luck.
Posted 6/20/2014 4:23 PM (GMT 0)
Hey there, friend. Glad you've posted here to get some support and encouragement and so sorry you're going through all this at home. I've been there, it's really hard to see someone we love begin to fade and it sounds like this with your grandma. I've got to commend you for caring about your dad and how this is all affecting him. You are carrying a big burden for a 17 year old and I'm sending you a hug.
There are really kind, free counselors at a family group, if you want the information. Also, I found a book that you and your dad might want to take a look at called "Complete Guide to Caring for Aging Loved Ones" which is probably at your library.
Please keep us posted!
HappySeeker
Posted 6/26/2014 7:53 PM (GMT 0)
One, first off.  Make sure someone reviews her meds and that is all okay.  over/under medicated can cause all sorts of issues.  If your grandpa or grandma was a veterans there is aid and attendance she may be able to apply for that would have with some home care costs.  First thing is, don't try to correct her.  With my dad I would make excuses, oh dad, you must be tired or have a lot on your mind.  I am right here.    Also, the county you live in may offer free respite care.  They would come sit with your grandma. That would allow a break for your father or you.
Posted 6/28/2014 9:23 PM (GMT 0)
The nighttime sleeping problems are called "Sundowning". You may want to Google it. It tends to occur as AD advances.
Posted 6/29/2014 4:49 PM (GMT 0)
Hello .........

   You and your Dad are both caring people. I have been down the road - at least to an extent - that your Dad is going down.

   I have an old thread posted here called "What to do?" It documents the last 7-months or so of my Mothers life while she was declining with Dementia.

   My family is/was very small - no brothers or sisters ... and I have cancer. So my help was limited to seeing her every week for the last 5-years or so - and paying her bills for close to that timeframe.

   But, her last years were in an excellent local Assisted Living Home for Dementia and Parkinsons. It was costly at about $6000. per month - but they were excellent. Nursing Homes - in my area were about $5000. per month and were not equipped well to handle Dementia or Alzheimers. And those that were approved for Medicaid were terrible places to send a loved one.

   Before the Assisted Living, she was at her own home but with a 24/7 caregiver. That too is expensive. The group we used was about $5000. per month and they were toward the lower end of pricing.

   She was fortunate to have savings that paid for the majority of those expenses for close to three years. Last Summer, as her savings were getting low, I put her house up for sale. It was sold and allowed her the available cash to live up to two more years in that Assisted Living Home.

   Everthing is so expensive - for most people. And Dementia patients need the type of care that often cannot be found in a Nursing Home. Finances are difficult ..... and the typical Dementia patient unknowingly makes demands upon their caregivers that sometimes are difficult to live with.

   I would highly suggest your Dad (and maybe you too) go to a counselor who works with caregivers. Both of you need re-assurance at times - and certainly need regular breaks. There are agencies of volunteers who may be able to help you with periodic breaks.

   You may find a support group for caregivers - and I would highly suggest that too.

   I did at one point, investigate government assistance - because my Father was in the armed forces. It is available for the spouse of a veteran - BUT .... only after the spouses total net worth is down to $30,000. including the value of a home. And then, the maximum I found was about $1000. per month ..... and you can't get into any kind of a retirement home for 3x that amount. So, that only helps if there is a big social security check and pension check coming in - besides the government assistance.

   It is a dismal financial situation.

   One other thought is hospice care. It is available thru medicare - at no cost to the patient. While it usually is short-term care - it is sometimes available for more han 6-months. It must be recommended by a doctor though.

   Note - all of the above financial info is based on living in the U.S.!  

   I am so sorry both of you are going thru this ..... and realize it's doubley painful because you love grandma!

Peace and wellness

Rob & Gizmo

 

Posted 7/2/2014 10:08 PM (GMT 0)
That is so much to be on your shoulders. So sorry. My Dad had Alzheimers. He was a gentle man, who became violent and uncontrollable. Every nursing home we put him in, they kicked him out. Even though they claimed to have Alzheimer wing , they really weren't equipped. We finally got him into a Alzheimer only facility. They took his social security check, because my Mom & Dad had no money. It was 3 hrs away, but they treated him wonderful. I don't know what state you're from, but try & find a facility like that. Good Luck

Post Edited (Mema sesond time around) : 7/2/2014 4:25:53 PM (GMT-6)

Posted 7/4/2014 1:00 AM (GMT 0)
Hi,

Bless you and your dad. I'm popping over from the Crohn's forum, but my father had Alzheimer's and my mom Parkinson's, which had dementia with it, so I know what you're going through. It sounds like time to get outside help. You and your dad's needs have to be considered too. Dementia, especially Alzheimer's, can take down the best of the best family caretakers. Their needs can become far greater than our capabilities or resources at home.

It can also become unsafe for your grandmother and your family. Getting up in the night with dementia poses a real risk of the patient doing something dangerous, like catching something on fire on the stove or driving when confused, both things we found my father doing when his illness took a sudden turn for the worse one weekend. It turns out that he had a raging kidney infection which made the dementia far worse.

When elderly people get an infection, like a urinary tract infection, it can actually cause dementia symptoms or make existing dementia far worse and it can be life-threatening. We found that out with my dad. If you grandmother has suddenly changed, she needs to get checked out ASAP. When we got Daddy treated for a kidney infection, his dementia improved.

With my mom, who became sick first, we did everything to keep her at home (nearly ten years). There were pros and cons to that. My and my dad's health suffered from the stress of caring for her at home. My dad was in early stages of Alzheimer's while we were caring for her.

My dad always hated the idea of a nursing home, but his needs far outweighed what we could do at home. We had to find him the medical care he needed. There are horror stories about nursing homes, but we found a nursing home close to us that had an Alzheimer's unit and he was treated very well there. He actually improved enough to get moved into a regular room and he really thrived there and actually enjoyed it. It was a far better life for him than we could have given him at home. So not all nursing homes stories are bad.

I hope you can get some much needed help. -Joy
Posted 7/4/2014 1:51 AM (GMT 0)
I'm sorry I didn't address this.

If you're in the US, your grandmother would qualify for Medicaid which would pay for her nursing home care and medications, hospitalizations, and doctor visits. Unless someone is fairly wealthy, they usually end up with Medicaid paying for their care eventually. Your father or a sibling needs to get your grandmother evaluated. Her doctor would be where to start this discussion of her care. The nursing home we chose explained all the financial ins and outs about Medicaid. Also if a patient is has been hospitalized, Medicare will pay for the first 20 days of nursing home care.

In the state I live in, a patient does have to spend their own money down toward their care until they reach about $2000.00 before Medicaid kicks in. If your grandmother is already in a Medicaid program, all this about spending down doesn't apply. In my father's case, he had savings that he paid for his care with at about $4,000.00 a month. His Medicare still paid for his medications and hospitalizations. He still received his Social Security check during that time. We would have eventually exhausted all his savings except 2000.00 and then Medicaid would have kicked in and started paying for all those things. He still would have received a very small amount of money monthly for his personal use.

During that time Daddy was paying for his care, he was allowed to spend down some of the money in other ways that wouldn't hurt his ability to qualify for Medicaid later on (he couldn't give it to his family for instance). He prepaid for his funeral. He was allowed to still own one automobile. There are things you can and cannot do when qualifying for Medicaid, but the financial office of the nursing home explained all that to us. We also hired a lawyer since Daddy stilled owned a home and property. Daddy passed away before he spent down everything so we never had to deal with Medicaid and he didn't have to sell property and such.
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