Does anyone have a parent with dementia or alzheimer's?

  • Posted by a hidden member.
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    Jul 24, 2013 5:47 AM GMT
    And are you required to go to their house to take care of them? I'm in that situation now with a step mother.
    Why is your parent not in an intermediate care home?

    Thanks for input. My siblings for some reason haven't hired help and we're stressing out. My Dad has passed recently.
  • monet

    Posts: 1093

    Jul 24, 2013 1:31 PM GMT
    I currently look after three parents with Alzheimers.

    My mother is in late stage Alzheimers; most of the time she doesn't recognize me anymore. My father has recently begun to display early signs of Alzheimers such as short-term memory loss, which manifests itself in asking the same question or telling the same story again and again.

    They still live in their house with the assistance of paid caregivers during the day. My mother is continent during the day thanks to the caregivers who bring her to the bathroom every two hours, but at night she is put to bed in diapers because she is incontinent.

    My parents are in a good financial position and they can afford to have paid caregivers come in each day. My father apparently made a promise to my mother that he would not put her in a nursing home and that he would take care of her at home as long as he could.

    I am distressed that my mother is put to bed at 7:30 by the caregiver and does not get out of bed or have her diapers changed until the new caregiver arrives at 9:00 the next morning, thereby being in soiled diapers for 13 or 14 hours straight. Although my parents live only half an hour away I only visit them once a month because I have a really toxic relationship with my father. Thankfully one of my sisters lives near them and she visits them daily.

    Up to this point my father has adamantly refused to consider moving to assisted living where he could live independently in an apartment with my mother in the adjoining nursing facility. But now that my mother is incontinent at night and he is unable to change her I think a change is imminent. In fact, my other sister (who lives out of town) called me last night. She is in the area for the week and she asked me to meet her for lunch tomorrow. I am sure the topic of discussion will be what to do with my parents and how to convince our father to move to assisted living.

    Then there is my mother-in-law who has medium stage Alzheimers. She lived by herself but we noticed over the past several months that she has been unable to properly care for herself anymore so we invited her to move in with us. Surprisingly she agreed to this and last weekend she moved in. It's only been 5 days but so far it is working out very well and we are pleased that we can keep a closer eye on her and help her with her daily needs.

    As far as your situation goes I think there are two main reasons why people resist putting their loved one into a care facility. The first is that some people simply cannot afford the high cost of moving their family member to an institutionalized care facility. The second is that some families think that they can provide for their loved one better at home and that the patient will not like being in a facility.

    Who is the decision-maker for your stepmother? Are there other family members who can help you with your stepmotherā€™s care?
  • Destinharbor

    Posts: 4435

    Jul 24, 2013 3:30 PM GMT
    My mother, now deceased, had alzheimer's. My dad took care of her in their home until she got to the feisty stage (which as I understand it, will happen to all with this disease) and she repeatedly tried to strike at him. This was a quiet little woman who I NEVER heard raise her voice in anger. A couple of times when she'd try to hit dad, they both would tumble down and dad was starting to decline as well as a result. Still, it wasn't until she fell and had to go to the hospital that we moved her to a nursing home. I thought it was the most tragic thing you could do to a parent, separate them from everything they know and loved to live in a nursing home with strangers. And with a room-mate! A crazy room-mate! Turned out to be the best thing for her. She was so far gone she didn't even know she was there. The room-mate became like a childhood friend. She was watched over 24/7 and actually seemed much happier until the end. It seems awful to do that to a parent but at that point, it really is the best thing for them both physically and mentally. Sad but true.
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    Jul 24, 2013 4:51 PM GMT
    My mother periodically lapses into dementia. Metabolically-induced, so usually it's a matter of falling off her complicated medication schedule. It takes months to recover. Its a matter of checking her pills and playing "20 questions" every day to figure out whether she knows what planet she's on. She was never exactly a mental giant, so sometimes it's really difficult to tell until things slide too far. I went to her house every day for that for years. Care facilities cost a lot of money. But eventually she grew so helpless that I would have to quit working to take care of her. Now she's living in her own apartment in a retirement home/assisted living center. Which we can't afford. I'm not sure that they actually keep close enough watch on her meds, but they take care of everything else. Not sure what we'll do when the money runs out.
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    Jul 24, 2013 5:01 PM GMT
    My mom has Alzheimer's. She's just in the forgetful stage but it's progressing - she just got to the stage where she gets lost going to familiar locations like the doctors office (my dad won't let her drive by herself any more). Fortunately my dad is healthy physically and mentally. They're in Kentucky, while I'm in Connecticut and my sister is in Oregon, so we kids aren't in a position to help out without a major change in our own lives.

    My parents 50th anniversary is in September, so we've rented a house on the Maine coast for a week for a family vacation. One of our goals that week is to talk to my dad about what we should do if he passes away first and mom can no longer care for herself. Hopefully mom will be able to provide some input too, but dad has warned us that so far she hasn't shown a willingness to do so. Kind of a 2-edged sword - she won't discuss it now while she has some mental capacity left and won't be able to discuss it when it's too late. She's stated since I was a kid that she doesn't want to go into a nursing home, but what if we're forced to do it? It'll be the hardest thing I've ever done. And if it happens, where?

    Alzheimer's is a very scary disease. It's upsetting to watch the parent you knew as a child regress like this. She's not the same person and never will be. So sad. My dad has been amazing and has stated he'll keep her home as long as he can.

    Any caretaker of a person with Alzheimer's has to have the patience and tolerance of a saint. I'm very proud of my dad for handling this life stage so well, he's been awesome.
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    Jul 24, 2013 8:59 PM GMT
    My mother died of Alzheimer's also. If anyone here is dealing with someone who has Alzheimer's, I STRONGLY recommend you read this book:

    http://www.amazon.com/The-Forgetting-Alzheimers-Portrait-Epidemic/dp/0385498381/ref=sr_1_1?ie=UTF8&qid=1374699220&sr=8-1&keywords=the+forgetting

    It's called 'The Forgetting' and it's an excellent read for caregivers and people that know someone dealing with Alzheimer's. It's broken into three (3) stages of the disease and is VERY accurate in what you should expect. It helps you to anticipate and react to various actions, moods, responses.

    Seriously, one of the hardest diseases to deal with and one of the saddest deaths to watch. If you're a caregiver, you need to be in a support group! This is very very stressful and difficult work. The caregiver can not successfully care for someone with Alzheimer's alone.

    My heart goes out to anyone that is dealing with family or friends with this wicked disease. Watching people you love fade away for many years is heart breaking!
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    Jul 24, 2013 9:16 PM GMT
    My mother is only 78, and appears to be just fine. She drives, goes everywhere, shops, travels, and lives a normal life. Normal, except she has multiple doctors and drug stores. She does whatever she pleases - and cannot be stopped. Headstrong, vicious when she wants to be, sweet and kind when she wants to be. Bi-polar? I think so. Early dementia starting? Possibly. So many bottles of meds it astounded me when I found out about it a few years ago. You can't believe all the bottles of pills she has. Trying talking with her about it? Yes. Many times. She is not giving a good gosh damn what my family and I say. It's like Valley of the Dolls. I thought only Judy Garland and similar cases happened - - - to OTHER people. Never thought I'd see that in our family. She made my druggy, miserable, homophobic brother (her life long pet) her power of attorney. That ties it! He'll do anything to please her. Lives with her - sponges off of her. Never earned a dime. A vicious pair. I stay out of it. No wonder I left home at age nine and had a great life with the grandparents. The grandparents never contracted dementia or Alzheimer's disease, but I've seen a number of others go through it. Sad.
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    Jul 24, 2013 9:21 PM GMT
    My grandmother had it. You need outside help - sitter or nurse. You can't do it alone. My grandmother was eventually put into a 24 hour facility for care until her death. From onslaught to death was about 10 years. Families can't go that distance without help.

    Currently a friend is dealing with his mother. He has hired a sitter because he and his brother have to work during the day. He's moved in to be with her in the evenings.
  • BillandChuck

    Posts: 2024

    Jul 24, 2013 9:23 PM GMT
    Despite almost all our parents gone (one 90-year-old last year step-mother), we and most importantly they were blessed to not have Alzheimer's enter our equation. BUT we did deal with dementia of a 100-year-old great aunt who was a surrogate grandmother and outlived her last remaining niece, Bill's mother. Again, we were blessed to have the financial resources (and she was extremely financially well-set) to deal with it in an extraordinary way to keep her comfortable and well attended-to around the clock. Emotionally for us, as well as for her during her times of lucidity when her very-odd memory allowed her to glimpse her demented time, it was a nightmare. Harder than losing our youngest son. While we wouldn't presume to compare our blessings of resources, what we can say is the obvious: it's a marathon, and the emotional impact is continuous and always newly and differently agonizing. And that's aside from the physical impact and drain. We wish you support and blessings for the trials you're going through and for those to come.
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    Jul 24, 2013 11:07 PM GMT
    I think one of the hardest parts of Alzheimer's is wrapping your brain (and heart) around the fact that it leads to only one thing and that is death.

    There's no cure, there's no solution, you simply have to sit back, allow time to pass and watch your loved one go from the vibrant person you once knew back to the fetal position similar to the baby they began as.

    I highly recommend keeping your loved one at home but that's not always possible for some. In home nurses and aids can be a help during the day. The caregiver has a big job and it will take it's toll. My dad looked like he had aged 100 years just before my mother died. He was there to the bitter end wetting her lips in those final moments as she slipped away.

    It's nice to have them surround in the familiarity of their own home with their family or caregivers there for the long haul.
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    Jul 24, 2013 11:16 PM GMT
    My mom has been battling dementia and Parkinson's for over 20 years. She's in the final stages now and we recently transformed her to a full care facility after year's of family and in home care...it's just a lot of love, time and care...the larger your support group, the easier it is to handle....as Hillary said..."it takes a village"....
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    Jul 24, 2013 11:43 PM GMT
    Consider planning end of life care before her cognitive function decreases. Many families assume they know what their love one would want regarding healthcare treatments towards end if life but when the situation comes, I've seen sibling fall out bc they don't agree on what their loved one would want done or not done.

    Also remember to enjoy your loved one. You want to avoid simply being the care taker for the rest of his/her life and enjoy being the son, daughter, or whatever. There are my good home health options than can help you to make this happen.
  • RSportsguy

    Posts: 1925

    Jul 24, 2013 11:50 PM GMT
    My father was diagnosed about 5 years ago with Alzheimer's! He has his good days and bad. We thought when they took his driving license away that it was going to be bad. They did it almost 2 years ago and he was fine with it then. He is frustrated now that they took it away from him. My Mom has early dementia. My parents are not at the stage where they have to go to a group home. It is good to keep them in familiar settings.
    Wish you the best Bradomo!!
  • monet

    Posts: 1093

    Jul 25, 2013 2:13 AM GMT
    Both of my parents have Alzheimers and at least 3 of my 4 grandparents had it so I know first hand the ravages of the disease. If/when I am diagnosed with it I plan to walk in front of the commuter train that goes by my house. I have spoken to my children and made them promise me that if I am unable to do it myself that they will push me in front of the train.
  • 24hourguy

    Posts: 364

    Jul 25, 2013 3:11 AM GMT
    My Dad has dementia that will eventually lead to Alzheimer's. He is 77 y/o, and was diagnosed about 7 years ago.

    I came home "temporarily" about 11 years ago to put my life back together. Mom & Dad were there for me when I needed help....so now I get to be here for them. Alzheimer's is a cruel and painful disease....mostly for the family and people around them. I would say we are probably in the middle to late-middle stage of the disease...with the occasional cross-over into late stage situations. The worst part of this is watching how upset my mom gets sometimes. Dad is becoming someone else and she is losing him slowly, every day.

    I am glad that I can be here physically and emotionally for them. My mom would not be able to do this on her own. She is not physically strong enough to handle him. I kind of see my job as protector, peace-maker, distractor, and occasionally I have to be the bad guy (especially when it comes to Dad's shower-night). I haven't always handled this well, but I try to do everything with as much love as I can.

    One of the most helpful things Mom & I have done is try to educate ourselves. Here in the USA there is the Alzheimer's Association (www.alz.org) and they are a great resource for information and they can direct you to local chapters with more local resources. We attended a 10 week training course for caregivers (one day/week for 10 weeks)that helped us to better understand the disease, how it progresses, things to look for, and strategies for disarming potentially volatile situations. The course was either free or really affordable -which is good because my folks don't have deep pockets to dig into.

    Dad is home for now, and probably the foreseeable future. We don't have the financial resources to put him into a care-facility. The average nursing home runs somewhere around $7000/month....it would wipe them out....and I'm not one of those millionaire-gays with tons of free-flowing cash to pay for this either. We do have a small long-term care insurance policy that allows us to take my dad to an adult day-care a couple days/week -which is good for him and for Mom. It's a nice place and everyone there is really focused on keeping the participants engaged and safe. He likes going there, and it gives my mom a break to do other things.

    We have legally begun to plan for the future. My mom still deserves to have a life, and I can not allow his disease to affect her health. At some point Dad will need more care than we can give him. I hope he passes before we get to that point. I don't want him to suffer, I don't want my mom to suffer, and I don't want suffer either.
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    Jul 25, 2013 4:12 AM GMT
    24hourguy saidDad is home for now, and probably the foreseeable future. We don't have the financial resources to put him into a care-facility. The average nursing home runs somewhere around $7000/month....it would wipe them out....and I'm not one of those millionaire-gays with tons of free-flowing cash to pay for this either. We do have a small long-term care insurance policy that allows us to take my dad to an adult day-care a couple days/week -which is good for him and for Mom. It's a nice place and everyone there is really focused on keeping the participants engaged and safe. He likes going there, and it gives my mom a break to do other things.

    We have legally begun to plan for the future. My mom still deserves to have a life, and I can not allow his disease to affect her health. At some point Dad will need more care than we can give him. I hope he passes before we get to that point. I don't want him to suffer, I don't want my mom to suffer, and I don't want suffer either.

    Planning financially for the remaining parent is very important! I think you have to go back 3 years when listing your assets to qualify for help in care. Splitting up assets is a good idea if you're in a position to give it to those you trust can feed it back yearly within the legal limits.

    Also, another reason for Long Term Care. If you don't have it, get it!