I was the sole caregiver for about a decade and, if you think shared caregiving doesn’t work: try being the lone workhorse. It does NOT work, because it can’t for very long. (Fortunately Mom had her own living space & some meals were provided.) But medicine, med. appts. groceries, trips anywhere, errands were on one set of shoulders. As an only daughter, I was the only one expected to do anything - for far too long. I had to retire early to cope with it. Brothers lived elsewhere, and never came in to offer help for this. One did help on other ways. steering me toward the moves described. This picture in these times is changing a little, if still much too slowly. My advice is, always: decide what you can handle, let Mom & family know “ here is what I can do.” The rest must be paid for by all ( or Mom if she’d can afford it) or done by them or outside caregivers.
I live almost 1600 miles away from my then 64 year year old brother and his 22 year old daughter--daddy's girl--lived near him. I suspected he had early onset dementia since it's in our family. The Alzheimer's Association told me to get POA and a diagnosis, which turned out to be glioblastoma. My niece and I were a team--we were both POA and coordinated things for his care. I was on the phone a lot and set him up for food stamps, Medicaid, Social Security retirement, Medicare, found doctors, and she was on the ground, taking him to the attorney's office, doctor, grocery shopping, and letting me know how he was doing. When it came time for paperwork to set up cremation and hospice, she signed the paperwork while I was on speakerphone. I got him into assisted living and went to clear out his apartment with my niece's help. I found an excellent nursing facility and an amazing hospice. They appreciated that we were so involved in his care. Ultimately I made six trips including one for his celebration of life. An additional concern to me was helping my niece deal with her dad's passing. She and I both agreed there was nothing we regretted in his care. It was a horrible situation but all things considered it couldn't have gone any smoother.
We “shared”. The other “caregiver” moved 1,000 miles away and wrote one check, once a month, and visited 2 or 3 times a year.
I visited 3 or 4 times a week, bought everything she needed whenever I could, celebrated holidays with her, dealt with her care staff, made the decisions about her care, became her designated SS payee, and paid all of her other bills.
We were “equal” POAs, and will receive equal amounts from her estate.
I did this because I loved her, and because in the last 2 weeks before she died, I told her I loved her and she summoned up the strength to respond “I love you too”. (The last words she ever uttered).
Fair? I think so. “Caregiver” will get money. I got much MUCH MORE.
Hello. I'm the youngest of 4 girls and mom lives with me. She gave me the home years ago because she was tired of dealing with the cost and maintainance of it as a single mom. The house is a reverse mortgage and requires a LOT of work. Now she can't live alone so she lives with me and my 2 kids (16 and 20). I am an experienced CNA with a history in home healthcare so it makes sense for it to be me to care her. However, my other sisters rarely see her now so they help with the bills. It's frustrating and exhausting but..... It's an honor to be a part of her final chapter. She's only 80 and in good physical health, it's the mental decline that's a challenge. Hang in there. She appreciates you.
Tjmila: I moved in with my mother from out of state to care for her. My sole sibling, a brother said "He wouldn't do the caregiving" when it was his turn.
I guess on some level yes we are "sharegivers". The vast majority of the hands on day to day care falls to my SIL/BIL because they moved in with FIL a number of years ago (they fell on hard times of their own and needed help, at the time he was fairly independent and any time he needed anything we usually assisted because they lived further away.) When they moved in a lot changed. He stopped doing anything for himself and became dependent on them for nearly everything. As a result their temporary stay turned permanent (unless things line up to move him to a skilled nursing facility) As far as caregiving goes, as I mentioned they do most of the day to day by virtue of living with him. We are about an hour away. We assist with any appointments (because he is now a two person transfer), are the "interventionists" as far as warfare negotiations (long story), technical support, issue fixers, problem solvers, scam de-escalators, and back up care if they can't be there. We also all have agreed that we don't deal with him until we've all talked. We deal with things as a united front. Dh is the POA and executor of his will. SIL is back up POA but essentially since the POA is not in play anyway we all have HIPAA clearance for him. And we all talk regularly about his care and issues. The only way shared caregiving works in my opinion is if everyone is on the same page and communicate regularly. The only place we aren't on the exact same page is that DH and I feel that he is really at the point now where his needs are too much for them, they have their own medical needs now and it is wearing on them. And there is only so much we can help them. We would prefer to find a skilled nursing facility for him. And they absolutely agree 100%. But they have not to date made a plan to move out and as long as they live there he will absolutely never have a need to leave. The VA has outfitted his home for his mobility issues and he is content to let them wait on him hand and foot. And until they hit their wall with his care we cannot do anything to change the situation. So if you are considering sharing care, you absolutely have to recognize that the load will rarely be as balanced as you would like, there will probably be disputes and you need to agree up front on how you will resolve them and you have to decide how much you personally are willing to give. Because if you give all, and are the solution all the time, over time no one will look for any other solutions and you may find that you aren't sharing so much as carrying the full weight of it all.
My sister lives near Dad, who is in a memory facility but still requires a lot of interaction (aside from regular visits) due to all LBS and delusions. She does the lion's share of caring for him. I live a day's drive away and have POA. I take care of all that entails, as well as helping with delusions over the phone with him on a daily basis . When my sister needs a break, I go down and take care of things there. It works for us, and no one resents what they need to do. Dad needs us now, and we are glad to have the chance to help him.
My sisters have scheduled days when I work and support my decisions. I run things by them but one person in charge works best for me. They are my essential and reliable support staff. Truly they make my life and my mothers life better. The end result is that my mother is happy every day (maybe not all day).
Each person in a family has their own thoughts on being a caregiver and their own lives to lead.
Of course, in an ideal world the caregiver duties would be shared but it isn’t always possible.
Can you share a bit more about your situation?
This picture in these times is changing a little, if still much too slowly. My advice is, always: decide what you can handle, let Mom & family know “ here is what I can do.” The rest must be paid for by all ( or Mom if she’d can afford it) or done by them or outside caregivers.
I visited 3 or 4 times a week, bought everything she needed whenever I could, celebrated holidays with her, dealt with her care staff, made the decisions about her care, became her designated SS payee, and paid all of her other bills.
We were “equal” POAs, and will receive equal amounts from her estate.
I did this because I loved her, and because in the last 2 weeks before she died, I told her I loved her and she summoned up the strength to respond “I love you too”. (The last words she ever uttered).
Fair? I think so. “Caregiver” will get money. I got much MUCH MORE.
What do you want to know about it?
When they moved in a lot changed. He stopped doing anything for himself and became dependent on them for nearly everything. As a result their temporary stay turned permanent (unless things line up to move him to a skilled nursing facility)
As far as caregiving goes, as I mentioned they do most of the day to day by virtue of living with him. We are about an hour away. We assist with any appointments (because he is now a two person transfer), are the "interventionists" as far as warfare negotiations (long story), technical support, issue fixers, problem solvers, scam de-escalators, and back up care if they can't be there.
We also all have agreed that we don't deal with him until we've all talked. We deal with things as a united front. Dh is the POA and executor of his will. SIL is back up POA but essentially since the POA is not in play anyway we all have HIPAA clearance for him. And we all talk regularly about his care and issues.
The only way shared caregiving works in my opinion is if everyone is on the same page and communicate regularly. The only place we aren't on the exact same page is that DH and I feel that he is really at the point now where his needs are too much for them, they have their own medical needs now and it is wearing on them. And there is only so much we can help them. We would prefer to find a skilled nursing facility for him. And they absolutely agree 100%. But they have not to date made a plan to move out and as long as they live there he will absolutely never have a need to leave. The VA has outfitted his home for his mobility issues and he is content to let them wait on him hand and foot. And until they hit their wall with his care we cannot do anything to change the situation.
So if you are considering sharing care, you absolutely have to recognize that the load will rarely be as balanced as you would like, there will probably be disputes and you need to agree up front on how you will resolve them and you have to decide how much you personally are willing to give. Because if you give all, and are the solution all the time, over time no one will look for any other solutions and you may find that you aren't sharing so much as carrying the full weight of it all.
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