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My father (75) has limited mobility and some kind of dementia diagnosis. Many of his symptoms have to do with sleep and lack thereof. At certain times, he sleeps a couple hours or less a day, and after a few days of this begins to hallucinate. My mother (70) is his main caregiver, and my question right now is about her.


If she is not there, my dad feels overwhelmed and scared, even if other family members are there with him. (I have 2 siblings who live very close; I am 3 hours away). Sometimes she will drive him around for hours at a time because sometimes it helps him sleep. She feels overwhelmed and frustrated because there are options he doesn't want to try (new meds, mostly). When we ask Mom how we can help her, she says we can't because he only wants her. I know that it is best to offer help in concrete ways, but I don't know what that might look like. She doesn't want "strangers" in her house-- so someone coming in as respite or housecleaning wouldn't be welcome. And I feel limited being so far away-- I can't stop in to do laundry or mow the lawn. Any advice on how I can be helpful?

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It’s funny about how people relate to distance. I always did a lot of driving over the years for my work so it didn’t really bother me. My mom lived three hours from me. I went once a week and took food I had cooked, all other grocery and paper supplies and a lunch I had picked up on the way. While I was there I dusted, vacuumed, mopped, changed linens, emptied the garbage, put away supplies, laundry, changed out food, cleaned appliances, did the mail, gave hugs and kisses, a short visit and drove back home. I did not mow the grass but I did sweep the porches. On days she had drs appointments ( which were rare) I would pick her up, drive the three hours back to the city, do at least two visits plus a pacemaker check. Each trip included lunch and dinner. Then write up all the notes from the doctors at her house and then head back to my home. A year or so into that I began doing much the same for my aunt who only lived two hours away. About three years ago I hired help for my aunt and it has really made a difference. I also hired a house keeper the last six months or so of my mom’s life. I had her meet me there and told my mom she was there to help me. Mom didn’t like it but I no longer let that stop me.
I don’t recommend doing what I did. I didn’t see a better alternativ. You can get a lot done in a short amount of time once you get your routine down. I suspect your mother doesn’t know how tired she is. I know I didn’t.
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Been there done that! I asked my sister what I could do to help since she was my mother's caregiver. She asked me to call mom each day. So I did. Eventually my older sister moved in with Mom because she couldn't be on her own. I continued to call. Eventually Mom told my younger sister, " You know that girl that calls me every day? She doesn't need to call every day I just don't have that much to tell her." I backed off because she didn't know who I was at times. Mom has passed now I am glad I called every day!
DL
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I am concerned because your parents are still relatively young elders. My late mother was 94 when I had to move in with her - leaving my home 500 miles and 7 states from her. Still, not every elder is going to be the same so perhaps you will have to readjust their living conditions. My own mother waited far too long and left the decision up to me.
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My heart goes out to you. Being long distance adds a whole ‘nother dimension to this caregiving stuff.I am across the country from my folks. They have always been incredibly dependent on each other and no one else. They both have dementia. They did, though, always listen to their docs. I was able to form an alliance with the docs who delivered needed messages my folks would never have accepted from me (“Time to move to a facility” “Time to stop driving” etc.). I remained in close contact by phone and was able to calm most crises that way between my visits. I wonder if you could time your visits with your siblings such that one sibling could stay with dad while the other took mom for some respite/self care. Just the fact that you want to help really matters. Staying in touch with your siblings to give them an ear and some verbal support is another way to help. One thing to work hard at avoiding is feeling guilty. Easier said than done. But if it creeps in, try to tell yourself what you would tell a friend or someone you love. Maybe even have those things written down so you can read them if/when you need to. Wishing you the best going forward.<3
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My mother was the same about outside help. We had a friend who had a housekeeping company so my mother finally let her do it. Do you have anyone you know maybe thru a mutual friend so you could introduce as a friend who does blah blah blah?
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First suggestion is to see what modifications could be made to your parent's home to help with your father's mobility challenges. Would a ramp to one door, grab bars, shower chair or transfer bench, hand shower, good bathroom heater, better lighting in a hallway, LED bulbs throughout the house (so they don't need changing as often), security system with fire alarms and a panic button to summons help, etc. help?

Second suggestion is to see if your Mom is open to you helping with some online shopping. Can you reduce her time out of the house and effort carrying stuff into the house by ordering staples that are delivered to the house? Walmart offers free pickup for $30 orders, free delivery for $50 orders and Amazon is free with a prime membership. Toilet paper, cleaners, paper towels, coffee, tea, soup, lotions/cremes, flour, sugar, canned food, etc. can be shipped to the house. There are also some shopping services where someone would shop your mother's list in her favorite grocery.

Third suggestion is to keep talking about respite and housekeeping care. My experience is the first person you manage to get into the house is the hardest. I understand that your father does much better in your mother's care, but if she is going to continue to care for him she MUST take care of herself too. She needs respite so she can attend to her own appointments (doctor, medical testing, errands, shopping) and have an occasionally break. If there's a senior center or senior day care your father could attend even one morning a week it would be a big help to your mother.

Please remember when talking about this stuff to be supportive, respecting your parents are still the final decision makers in their home. I found stating that something would help me feel better about their safety or comfort encouraged my parents to try things they didn't feel they "needed". (I read where seniors often sleep heavily and don't wake for fire alarms so I would feel so much better about your safety if you had a fire alarm on a monitored security system.) My parents were very against changing light fixtures in their home so I gave them a ceiling fan as an anniversary present and promised to take it down after 30 days if they didn't like it. Once they experienced the ceiling fan in their den, they loved it and didn't oppose replacing the kitchen light with a ceiling fan a couple of months later.
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We have taken care of the financial and medical basics-- POA, medical proxy, end of life.
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I was the only child left to deal with my elder parents from 3 states away. Mom passed away last year and dad is in a memory care facility 12 hours away.

What you describe is very typical of problems with stubborn elders who are no longer reasoning well. With my folks it was 5 years of no mans land where they were legally competent, I couldn’t force help or moving, but for all practical purposes it was a train wreck.

You post raises lots of questions: Does anyone have POA? Who’s controlling the finances? When I saw it coming with my folks I started laying track, chasing down the money, getting POA, looking at assisted living places etc.

I could only do as much as my folks would allow. I had to wait for the inevitable crisis, mom falling, hospital then to assisted living.

Id suggest you make the trip and have a meeting with you sibs and get your ducks in a row. I did it all long distance. Made countless trips. I was lucky to be just retired when the problems hit.
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