My mother just turned 78. In 2014, she began to show signs of dementia and was diagnosed with dementia and Parkinson's.. She was still able to take care of herself at that time. Eventually, she could not handle any of her household responsibilities or drive. My sister elected to move in with her at this time. Since then, my mom has declined at a rapid pace to the point of being unable to perform her ADL's and toileting. She was hospitalized the beginning of January for dehydration and that has made things worse. My sister is overwhelmed and can't handle the care. We have a nurse that comes in 8 hours a day during the week, but all care is left to my sister at night and on the weekends. We are torn about what to do. Mom is still with it in terms of knowing where she is and does not want to leave her home. There are so many things to consider. On top of all this, we are getting some family guilt thrown at us because our aunt took care of our grandmother until she died at age 98 without ever moving her to a nursing home. I think the same is expected of us. My sister is a prisoner in the house, as Mom can't be left alone for any period of time. I help as much as I can, but I live over 1 hour from them and can only help on the weekends. I know this is rambling, but has anyone gone through the same thing? I'd like to add that money is not a problem (Mom planned well for her retirement). We are so overwhelmed. I also believe Mom has Lewy Body Dementia with Parkinsonian features, but that's another story. Thanks
You said there are so many things to consider. Why don't you and sister discuss those things? Is more help needed? Can you hire someone around the clock to give your sister some peace? However, since your sister lives with your mom she will still be involved and I'm not sure it will help her stress having someone in the house 24/7. I would imagine that she would still feel obligated to help even if there's around the clock care.
Once you've discussed ways to keep mom in her home if you come to the conclusion that it's not possible then it's time for the nursing home discussion. The nursing home discussion should include your sister and your mom, then you. Family guilt has no place in the discussion. Your sister can't continue caring for your mom when she is so overwhelmed because of family guilt. This is YOUR mom. Only you and your sister are to make any final decisions.
Let us know how it goes.
Dementia, for me, was and is a game changer in the elder care home or NH question. As is mental illness. When an elder needs 24/7 supervision, it takes 3 shifts of young, mobile, trained caregivers to do the job.
If mom was hospitalized for dehydration, I'd say that's a pretty good indication that she's not getting the level of care that she needs at home, aides or no aides. Being at home is isolating for an elder. Being in a NH setting will give her access to peers, activities and better on-site health care.
My answer to anyone who looks askance at the fact that my 92 year old mom with dementia, CHF, Pleural effusion, anxiety, depression and aphasia is that my mother is getting professional care. They have nursed her through pneumonia 4 times now; I never would have even noticed the symptoms, because elders don't present with the same symptoms as younger folks.
Healthcare is ONSITE. No one has to bundle my mother up, risk her getting fractures getting her into a car to go to the doctor. The doctor or nurse practitioner comes to her. At the first sign that there was some skin breakdown, a special cushion was ordered and a wound specialist comes in to see her weekly.
There is simply no question in my mind that my mother is getting much better care in a facility than she would at home.
I think the guilt is me beating myself up, rather than anyone in my family actually judging me. My grandmother never had dementia, her body just wore out because of her age (98).
As my mother continues to deteriorate, it becomes more obvious that we are going to need to place her in a health care facility. It is so sad to see her become a shell of her former self. She is not interested in anything, has a low alertness level and wants to sleep all of the time. She is still ambulatory and can speak.
Last week a pipe burst in the house, flooding the upstairs and downstairs. All 3 bathrooms need to be redone, and all the carpet, flooring and ceilings downstairs need to be ripped out. Dry wall will need to be replaced. We really didn't need this now. My mom and sister are in a handicap accessible hotel room, and will probably be there for at least a month. Thank goodness insurance is paying for it.
It never ends.
To those who are trying to lay a guilt trip on you and your sister I would just ignore them. They are obviously ignorant as to what goes into 24/7 caregiving. Speaking from ignorance is easily done. Do what's best for you, your sister and your Mom.
After that, then either she likes the ALF and you extend the contract, with her willing consent; or she goes home with a full care package in place, as much as your sister agrees is necessary for her to cope. Or indeed to replace your sister completely. If money isn't an issue (and replacing family care with professional care costs a bomb and half), it can be done.
On the auntie issue: well, good for her. But auntie is not you or your sister. Your mother is not your grandmother. And besides, what was left of your aunt after all that? Not every practice deserves the status of family tradition.
All the time, I think about my mother who has been in a nursing home for the last 3 months. I feel guilty every day that she is there but we have no choice given her age. Mom always said she would kill herself if she had to go to a NH and she keeps saying she wants her house but we all reach a point we cant care for a house no matter how much we want to.
At 101 our Mom needs professional care. She can't walk and has dementia but keeps trying to get up and falls if she is not watched constantly. My sister and I are seniors ourselves and we physically can't take care of her or watch her 24/7.
Try not to let relatives make you feel guilty. You need to do what needs to be done for her (and for your) best interests.
A younger family member who seems to have control issues has moved his bedroom without his permission. Another family member is.suuposed to be planning to make a trip up here and was hoping for a visit but have been told they may try to move him to Florida. Not sure if he can travel as he is not doing so good. He is hanging in there but he is having a difficult time standing and not walking much anymore. Really miss him and not sure how other caregivers cope when their loved ones have had to stay in skilled nursing for so long and unusual family situations.
This has always been a nice forum and am hoping someone else can relate as this is really not easy to deal without cg support group.
The idea of doing a respite stay for mom while the house is undergoing rehab sounds like such a good idea for ALL of you. You may find that mom loves AL, or not. But in any event, it will be what sounds like a much needed break for your sister.