Aging parents

[Connie]

Mom went into the hospital yesterday. This would be her 3rd mini stroke. I witnessed 2 of them, which is awful to say the least.

She had an MRI last night and it shows advanced stages of dimentia. I had a feeling something wasn't right. In the last few weeks she has had trouble finding the right words, obsessed with paperwork, trouble swallowing, confusion, etc.

I feel helpless right now and don't know what to do. She will be 90 in early May. She has been living in her own home, with a lot of help from me. I do her meals, wash, cleaning, doctor appointments, bills, medication, you name it. I actually quit my job 2 weeks ago because I knew she was going downhill.

She always wanted to live in her own house until she died. Moving her here would mean that she would have to live on the second floor because of no bathroom downstairs. I'm also thinking that moving her from her home would just make the situation so much worse for her.

I am the Power of Attorney and myself and 2 brothers are the executors. I think for all 3 of us a home is out of the question. Dad died when I was 9 and she always said she would never leave. She has been there for 64 years.

What do I do now? Any ideas are sooooo appreciated.

[Nancie-Pa]

Connie, wish I could help in some way,but all I can say is that I'm sorry you have to go through this. Both my parents lived into their 90s and it was terrible to see them go downhill. I wish you the support of family and friends...it helped me alot.

[lprof]

Connie, I hear you saying that you want to honor your mother's wishes to stay in her own home, but you may be worried that YOU can not provide for her by yourself. My suggestion would be finding some portion of the responsibility that your brothers can and are willing to take on to help with both the mental and physical stress you are under. Being Power of Attorney means that you have the power to make decisions and to take control, but does not mean that you have to shoulder all the burdens.
Some questions that come to mind are:
Does your mother require medical care now (or when discharged), such as therapy, IVs, or injections (the kinds of care usually given in nursing homes)? Sometimes a family, even with help, can not provide necessary care in the home. What do her doctors or the social workers at the hospital think?
Can you find reliable help to hire? Can you afford such help? Do you know of local agencies providing health care workers?
Does she need someone with her 24/7? Would you have to travel far and would you be able to spend all the hours with her that are needed? Caregivers need time away to rest, find mental relief, take care of their own needs.
It sounds like your mother has completed legal paperwork. Does she have a Living Will and do you feel that you understand her wishes?
Your situation is one many of us face if we are fortunate enough to have parents aging along with us and it is a very hard one to face. I am sorry that you are at this place; I wish you well in finding solutions for your mother's care, and I wish your mom peace and comfort in the days ahead.

[Marcia (Mrs. Pete)]

I am NOT a doctor and have no professional platform to stand on however, I do have first hand experience with dementia. My mother passed away not long ago, after suffering with Alzheimer's. Her case became very advanced by the time she passed away.

My father did his best to care for her during the early stages and he, as strong and vital as he was, struggled with her care. It became dangerous for her, not to have professional assistance and she was moved into a skilled nursing facility within the retirement community they lived in. (As you may have gathered by my tense, my father has now passed away as well, just a few months after mom went...long story...)

Anywhoooo, the decision to move her there was based on the fact that she truly needed skilled nursing. The swallowing thing, for example: none of us could get her to take her medications but the nursing staff was able to do so. There was an inhaler that she needed once a day, that was a struggle. There were bathroom issues, major bathroom issues, and general hygiene that Mom needed a lot of help with. She thrived for two years in that facility, she gained weight back, she did exercises and every day she saw Dad. They had meals together. They did errands together like they used to...he kept up the routine as much as possible. What made sense to her, which we repeated over and over again, that this was the safest place for her, that Dad (and any of us kids) could not safely take care of her but we all would see her and spend the same amount of time with her that we always did.

Was she happy to go there? No. She complained about it a lot (dementia got to the point she thought people were stealing from her, my dad was having an affair, etc..). Did she have fun? Yes, there were good days and bad days. She actually got involved in bell ringing at the facility. Certainly more good days than when she was at home (she slept in her chair all day at home). A better quality of life for those last two years? Definitely. But, more than that, my father was relieved of the difficulty of constant care he was trying to give her and his care was no where near as good as what she needed. The frustration of caring for a loved one with dementia is enormous. We all would get testy with her after a few hours and that's not good for anyone! Mostly her!!!

I have no idea what the financial situation is for your family. But, dementia is a very serious disease that requires skilled help for the one who suffers from it and a lot of support for the family/care givers.

If you have any questions, feel free to PM me.

Rough years, those. Really, really rough. Thinking of you.

[brenda]

Marcia, that was very well said! One can only take on so much.

[mit43]

This is one of the toughest decisions we have to make in life.

When my grandmother began to go downhill, my Mom did everything she could to keep from placing her in a home. She made out ok for a few months, but then the burden of caring for her Mom started to overwhelm her. My grandmother had dementia and she was not aware of the hateful things she was saying to my Mom. We had to sit down and convince Mom that for her own sanity and health that she should place grandma in a good home where they were trained to care for her with compassion.

Sometimes our best intentions can cause us to take on more than we are able because we love our parents so much. The truth is we can show them love by making sure they are cared for 24/7 during a time of their life that we can not provide that for them.

Our prayers are with you during this difficult time.

[cocosmom]

Connie, I feel your concern. My 91 year old dad and 65 year old mentally challenged brother managed to leave together ( with our assistance) until recently. My brother passed recently and we took my dad in. Not easy rearranging your house and your life. I feel like a maid/nurse most days with no thanks at all after i work a full time job too. This is a man who made all his on meals a month ago but now chooses to sit and be waited on. He does not need a nursing home and he/we can't afford an assisted living. My husband is wonderful and keeps me sane. It sounds like your mom has few options. Your house isn't suitable, her dementia could be dangerous for her. I know from previous posts you have always been there for her. Unfortunately now her health may need more care and more controlled housing than you can offer. Hope you and your siblings can work out something to give you some relief.

[Connie]

I've already made my decision. We're getting a great companion for her so she can stay in the house. Mom was always concerned about leaving us money. I really could give a s&$) about the money. She makes sure that she has the same amount of money in 3 accounts for us....well....I'm using it for care and if 1 brother doesn't want to use his, then shame on him.

I appreciate everyone's ideas and views and help. We, my husband and myself, have realized that we have to put ourselves first before we can help anybody else. I know this may sound selfish, but it's almost a freeing feeling.

[Dome526]

Please email me off list. I work in the dementia field, and know of several key resources that you would likely find to be very useful and very helpful.
Tom in CT

[Lindy]

Gosh, you run into the NICEST people here!!!! Makes me feel great to be a part of this forum.

[Connie]

Lindy, you're right. Nice people who usually have a lot in common, in different ways.

Mom is having her ups and downs. Yesterday, she was hysterical laughing. Today she was crying. She says the hospital is going to put her into an institution. I try to reassure her that she will be coming home.

This disease is terrible.

[PA Girl]

I've already made my decision. We're getting a great companion for her so she can stay in the house. Mom was always concerned about leaving us money. I really could give a s&$) about the money. She makes sure that she has the same amount of money in 3 accounts for us....well....I'm using it for care and if 1 brother doesn't want to use his, then shame on him.

I appreciate everyone's ideas and views and help. We, my husband and myself, have realized that we have to put ourselves first before we can help anybody else. I know this may sound selfish, but it's almost a freeing feeling.

It isn't selfish, you can't take care of her if you are a mess yourself.

If that money is still in your mom's name, regardless of who she intends to give it to after her death, use it for her care. Why in the world would you "save" it for him? It is her money, take equal amounts out of each account every time a bill is paid. Keep records of expenditures and if he ever complains, show him the ledger. (and then the door......the stories I could tell)

My father was so deadset against a nursing home, he threatened to kill himself first and we had no doubt that he was 100% serious, to the point we removed the guns and ammo from his home.

We came very close to admiting him against his wishes. It was terribly difficult, in the end his quality of life was so poor. There was no way we could keep him at home due to location and his and our mental/physical health. It was only the swiftness of his decline that allowed him to stay at home.

It is terrible Connie and my heart goes out to you. Have you started prepping her house? Getting a hospital bed delivered? Will she be mobile? If so, you will want to clear things out to avoid falls, handles for the toilet/bath and so on. (Forgive me if you are aready thought of all this.)

[Connie]

PA, in June she broke her hip, went to rehab and we were able to get her a hospital bed, walker, the chair for going upstairs, etc. she does have a bathroom downstairs.

I think she has given up. Other problems are popping up every day, every hour. Just looking at her and into her eyes shows me that she's failing. She developed a UTI and I know that's not good either for somebody her age.

I'm trying to set up the caregiver so I can have some peace of mind.

[michigancouple]

Connie, I'm so sorry for all you're going through. It's tough when families have to make those decisions and arrangements for loved ones. God bless you.

[verjoy]

Having just gone through this last year, I know you are doing the right thing.

We called in caregivers in the last few months with my Mom, but she became suspicious of strangers in her home. Shortly after that she became so disoriented, fearful and agitated that she would only rest if my sister laid on her bed with her. My sister lived next door and is disabled herself, so she couldn't care for her, and we lived 200 miles away. We tried taking her home with us for a few weeks at a time but she fell one night and hit her head, then a week later when she was back home, suffered amnesia. Our home has an open stairway to the lower level close to her bedroom, and I became terrified that she would roam at night and tumble down the stairs.

She also had days and nights mixed up, endlessly searched the house, and we could not leave her meds where she could self-medicate. When she got to the point that she did not recognize the home she lived in since 1957, we knew it was time for a nursing home. She did improve for a few months while in the nursing home (they gave her a new medication) and she pressured us to go home, but we were all too exhausted to consider it. She did eventually adjust and then she talked about moving into her "apartment" (it was really just a private room) because she had to be close to her job. Until the last, she worried about how she was going to get to work the next day.

It seemed like when we were trying to keep her at home we would just get one problem solved and then another popped up. I hope your Mother gets along well with the companion, it makes all the difference.