My wife's been in a nursing home since 2009. She has dementia but knows who I am. She talks crazy and thinks there's nothing wrong with her. She thinks she can get up, drive and go to work but can't walk, can't eat solid food and wears a diaper. I'm all she's got. The kids live 1000 miles away. I see her once a week but only for an hour as I still work part time and work around the house. I live with my mother, I'm 66 years old and feel I should do more. I'm still dealing with this and wondering how our lives turned out this way. We lost our home and everything because of her stroke and dementia. She was more worried about taking care of herself than our home. A lot happened back than. Should I do more? Should I talk to someone about dealing with everything I've been through? Has anyone ever had the same problems? She and I want to be back in Texas around the kids, but don't know how to get her there. Plus we don't have the money. She's in nursing home on Medicaid, I'm on social security and working part time which won't be much longer.
I wouldn’t guilt myself or take on guilt trips from anywhere including here over you visiting once a week. That’s enough so that the staff there realize it is to their advantage to prioritize mom vs someone with no visitors,
Moving her in her condition would be prohibitively costly. Unless kids have the money, she likely will stay where she is.
I sense from your stream of consciousness post that you are possibly in a fragile mental state and who can blame you. You have social and financial stresses. Yes, I think talking to someone (like a therapist) could be helpful for you. You need to clarify boundaries so that you don't completely burn out. No one is going to take on the responsibility of telling you what, when or how to do anything, so this is why you need to find and defend your boundaries. A good therapist can guide you through this. Or, talk to a faith leader, like a Pastor or priest. Many churches offer counseling services.
Regarding visiting your wife: maybe what you are feeling is actually grief, and not guilt. You shouldn't feel guilty since you're doing nothing wrong. I used to feel guilt about visiting my very sweet MIL (in LTC 3 miles from my house) for only 1 hr a week, but then again she never remembered our visits and the director said she was fine in between times. It's not possible to be anyone's Entertainment Committee. People with cognitive impairment are rarely, if ever, happy due to the organic impact of the disease. I got good at shrugging and saying, "oh well it is what it is" and moving on. I can't control everything and must accept with peace the things I can't control.
Even if you visited her twice a week, is this enough to make you feel less distressed over her situation? I don't think so. Maybe spend that extra hour not visiting her but instead checking around the facility, talking to staff and gauging whether she's getting proper care of not.
Is your wife on any medication? Often people with cognitive impairment require medication to help their emotional state. Maybe have this conversation with the facility to see if this would be helpful to her, which would be helpful for you to know she's not so agitated.
Have you talked to your kids about moving closer to them? Would such a move mean your Mother would go, too? Your wife can certainly be transferred to another state and qualify for Medicaid there, but it's a big and permanent effort (that will cost money) and you'll need their help -- if they're willing and able.
I wish you clarity, wisdom and peace in your heart as you work on boundaries and look for relief.
Don't feel guilty, since you didn't cause all this. You had a normal life until a stroke damaged it. Not just your wife, but you and all your plans. Having so much stress is no picnic.
There are so many aspects to this situation that it's difficult to advise. If you're able to reassign some of the household chores to mom or a hired handyman, you could spend more time with your wife. That might be a good place to start.
Good luck to you.
o. The phone maybe staff can control the fine and a video link up
Tell them make an excuse call to last Mac 10 minutes sort of thing unless you can control it and say your phone money only allows 10 minutes and you’re just calling to say hi
sone situations aren’t ideal but they are what they are
try n stop beating yourself up over it
life’s hard enough as it is
It's sad how things ended up, but she being cared for. If it makes you feel better, find the time to visit another hour during the week. But try to understand that you can't make your wife happy anymore and you can't fix what is happening to her.
Also, it's time for you to take a little time for yourself to enjoy your life. Figure out something that you'd like to do. It doesn't need to be a big thing. Just something to look forward to. Go visit your kids for a couple of days!
Good luck!
We all have guilt and regrets about the things we didn’t do, but we rarely take time to acknowledge what we have done. Dude, you are a miracle, a hero, and should qualify for sainthood (at least on agingcare.com)!!!
From my vantage, there are three things missing: a plan, a team and a budget.
The plan: A good plan starts forward and works itself back to today. Start by picking the date you want to be living in Texas (3 or 6 months down the road should be sufficient). Then make a list of everything you need to do – from telling the kids to packing up her stuff to making PBJ sandwiches for the ride to Texas. Be detailed and include the start date for each task and the date by which each task needs to be completed. For example, if packing will take three days, you could allot Monday, Tuesday, and Wednesday. Don’t be pie-in-the-sky - everything will take longer than you think, so plan for it!
The team: You already have the team, you just don’t know it. You have the kids in Texas, the ALF administrator where she is, and, if you gave it a little thought, you probably know a few friends or relatives who could support you - maybe they would be willing to visit mom once a week also???
Call the kids and declare - like it’s rock solid - that Mom and you will be arriving in Texas on this date. If mom doesn’t have a place to live, she’s at your house. You need them to work with your Admin and find Mom a place that accepts Medicaid. Also, where are you staying in Texas???
The budget: With a bit of thought, you may be able to go from thinking you can’t afford it to knowing you can.
It may look like having a garage sale to raise some cash, cutting back on expenses or getting the kids to chip in. It would not be out of line to ask the kids to give up their morning $7 Starbucks to help pay for Mom’s care and safety.
Can I end by repeating the beginning?
We all have guilt and regrets about the things we didn’t do, but we rarely take time to acknowledge what we have done. Dude, you are a miracle, a hero, and should qualify for sainthood (at least on agingcare.com)!!!
You got this!
~BRAD
I love your positive attitude, but you have obviously never moved a non-mobile dementia patient in diapers across country (as I have).
It was a huge undertaking. And I had help. I saved up $7,000 (which took me nearly a year) to cover the costs of moving, along with one month's worth of living expenses while waiting for Medicaid approval. You can't apply for Medicaid until you reside in that state. It doesn't just carry over with you.
I had my dad and my uncle to help with driving the moving truck, while I drove with my husband in a car. We made frequent stops, and at every stop, I had to get my husband out of the car, into his wheelchair, cut up his food to minced consistency, feed him, then get him back in the car, fold up the wheelchair, and hoist it in to the back seat. Thankfully, I was still strong and fit then!
THERE IS NO WAY TO CHANGE DIAPERS ON SOMEONE WHO CAN NOT STAND, WITHOUT LAYING THEM DOWN. This became a very real problem! At one point, we stopped at a truck stop, all 4 of us in the restroom, my dad and uncle helping to hold my husband up over the toilet, while removing his poopy diaper and getting a new one one.
That did not work well.
Another day, we stopped at an inexpensive road-side motel, got a room, took him in and laid him on the bed to change the diaper. That worked out well. But, it was a $60 diaper change. We could have stayed there for the night, but we were trying to keep on schedule. In all, it took a day or two longer in reality than we had planned.
Many motels and hotels say they have handicap accessible rooms. But, that just means they have a bar in the shower. Have you ever tried to get someone from a wheelchair onto a hotel bed? I have. The beds are higher than the person's butt, and there's a side table, and a wall in the way of maneuvering the wheelchair into place. You have to cover the bed in multiple bed pads to keep from soaking their mattress. And many beds are very soft, so the patient just sinks in. Very hard to roll them and change diapers and dress them in this setting.
Then, you suggest the wife can stay at one of the kid's homes while waiting for Medicaid approval and a bed in a care home?
That is not at all advised! And unless you know their circumstances, and whether they have a house without entry stairs, have an extra bedroom, with a hospital bed, and can take time off of work to take care of an invalid, that is simply not practical!
When I made my cross-country adventure move with my husband, I was already taking care of him at home full time. I already had the house chosen and rented in our destination state. My realtor dad helped with that part of it. He found and toured a home in his neighborhood, met with the owner, helped with signing the agreement and getting utilities started before I arrived. I had a team of family members there to help unload the truck. We set up my husband's hospital bed first, and got him situated.
And to suggest that the kids could give up $7 Starbucks to help out financially is pretty presumptuous. Some people are poorer than daily Starbucks coffee. If the kids had extra money, they probably would be moving their parents closer to them.
Again, I love your positive spin on this, but I know the reality, and it is way more difficult than you describe.