Through a series of tragedies over the last 30 years - including both my mother's and my younger sister's death - I've ended up as the only surviving family member of my 75 year old father, aside from his 77 year old sister. I live hundreds of miles away from him; I don't have a family, but I've have a career and a life here for the past twenty years, though I visit my dad several times a year.
Dad has had many health issues over the last 10 years, including a major stroke and quadruple bypass surgery. Now, he's ended up with colon issues that have left him with surgery and a colostomy bag. He's getting less and less mobile, his health issues keep compounding, and to complicate matters, he has very little money - just SSI and some disability, no savings, no retirement, nothing. He's currently in a rehab facility, but he will only be able to afford it for a couple of weeks while insurance covers it, after which he may or may not be able to take care of himself.
I can't bring him back here to take care of him - I live in a small place with my partner, and my own mental health issues leave me wholly unsuited to full time caretaking. His sister has been helping, but she's getting older, and has her own issues to deal with. She wants him to go to an assisted living facility, but even putting aside whether or not he'd agree to it, I don't think he can afford to do so right now, not from the research I've done. I'm very much at a loss to figure out how to help from so far away. I can go down there for short periods at a time, but I can't afford to take long-term time off from my job to help in person. I don't know what we're going to do with him when his weeks at rehab are up, because my aunt can no longer do as much for him as he needs, and I don't know what kind of help either my dad or I can afford to get him.
If anyone here has any advice - either practical or emotional, ways to deal with the crippling guilt I'm feeling right now - I would greatly appreciate it.
Some things to consider......
If Dad is competent and cooperative get him to grant you power of attorney. You can then take care of his affairs.
If he’s broke, apply for Medicaid. Don’t use your funds for his care.
Get him in a facility there or move him near you. In my case it was easier to leave my folks in their hometown. The logistics of moving them would have been impossible.
Find one by searching on www.aginglifecare.org.
If there isn't one nearby, search for an eldercare advocate or a private social worker. If you still can't find one, ask the Area Agency on Aging in your father's area, the social worker at rehab, or a local elder law attorney.
Finally, some things you can do from afar are:
- manage finances
- arrange for meals to be delivered (not just Meals on Wheels - see "Mom's Meals" or "Magic Kitchen")
- keep records (medications, appointments, doctors lists, important documents)
- learn more about long distance caregiving (Google search)
We had a care manager for my dad when he was on his own after my mother passed away. It was so very helpful for our family.
Best of luck!
It doesn't sound like your dad has cognitive decline or issues (dementia of any sort) unless the stroke left him with aphasia? That may make it easier or it may make it harder depending on his cooperation level. How ingrained in the area is he still? Does he have a network of friends he sees regularly, a network of doctors it would be hard to leave or is he open to the idea/necessity of moving closer to you? Is he resigned to the idea of moving to some sort of group care facility or is he still determined to live in his own home? All of these questions/answers come back to needing skilled assistance of some sort of course, it's just a matter of how much is needed and what he can get where so Ahmijoy's point that you need to sit down with the coordinator/social worker at the rehab facility he's currently in is spot on. They are often very helpful and full of good info when you show interest and the willingness to put some effort into finding the right situation. You might need to do a little pushing to show that you are involved and care to get their best service and you might get it either way but they are often a wealth of knowledge and connections, help.
You might consider making a trip now to meet with the care team at rehab which will include the social worker/care coordinator and work with that person to set up whatever you decide. This is one of those pivotal decision times that is probably easier and best when you can be there in person to do everything but can be done from far away if it's your only choice. Being there gives you the opportunity to keep Dad more involved, discuss things with him better or at least feeling more involved too. Sooner the better because in my experience things suddenly move very quickly when it's time to move on according to Medicare, starting ahead of time gives you the opportunity to be better prepared and make better, more considered long term decisions. You might want to consult with his personal doctors for instance if they know him well and he knows and trusts them. You may find this is the right time to make a big move or you may decide he's still able and would be happiest going back home with a better set up for that to be successful for a while. Either way being there gives you the time to set either of those up well and start laying the groundwork for when it is time for the big move and have a better idea at least about whether that will include moving closer to you or staying in his current area.
If you do end up moving him back home first I am very happy to share some of the things we have set up that are helping to make my mom living in her home work for now. Some of them would probably help you having him in a facility in his home area too actually. One last thing, if you aren't able to work out a trip to do those things, meet with his care team now consider having a Family Meeting (that's what they called it in mom's rehab anyway) and or meetings with your dad and the social worker via Face Time or some equivalent. Being there with your face in the room really can make a difference I have found.
We did this for doctors appointments and each time a provider came into the hospital room when she had her stroke, my brother would have me there on Face Time (before I got there in person) and we even set up her Ipad so she could call me on the phone and then I could call back via FT on the Ipad when he wasn't there. It worked when the hospital staff knew to do it and didn't mind (most doctors even surprisingly were really supportive of this probably because she was having such a hard time communicating so having someone there able to give answers was helpful but she had a hard time answering FT and following it all with her hearing issues and her aphasia, setting up the earphones was too much without one of us to do it. so it wasn't ideal but it worked and would for pre-set sessions for you. We have since found the Amazon Echo Show which allows us to "drop in" without anyone having to do anything and the connection/presence is much better but that wont work without some prep. We did use it during her last 10 day stay in the hospital and it was so helpful but that's a different conversation.
I know this is all feeling very overwhelming right now and for sure it is a lot for one person to take on but you are already doing so much better than you realize. Just reaching out here, recognizing you have big stuff coming and need some help and then going out to find it, you are special and very capable of doing this and doing it well. Your dad is very lucky. I hope you will recognise that you aren't alone or at least don't have to be unless you choose to be. You also don't have to move him in with you or feel guilty about not doing that, you don't need to feel guilty about anything here. Keep up the good work, stay ahead of it as best you can by not putting stuff off and keep reaching out. Use as many resources as you can find that sound reasonable to you, not everything that works for me will work for you but collect it all and then decide for yourself and your dad. Hang in there and stay in touch. Feel free to reach out publicly or privately, there are lots of people here and elsewhere happy to share and help. It takes a village and one has been created here.
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