Only have two children, male, both in their 50 ‘s. Both live in other states and see my wife mainly at short family “Social” type gatherings- e.g. Christmas, etc. Neither seems to understand how difficult it is to be the (sole) caretaker. Both seem to be denying/ running from the severity of her condition. She is in late middle stage Alzheimer’s. They are resistive of their staying alone, as is my wife, with her for 4-5 days in order for me to get some respite. Any help here?
To be quite frank, your kids (and mine) don’t want to be caregivers. Two boys should not be asked to provide personal care for their mom. That’s just the way it is and no, it’s not fair. Nothing about caregiving for loved ones is fair. That’s why this site exists, you know?
Cut your getaway respite down to a weekend and pay for a home health care adult sitter, or check out facilities to see if they will accommodate her.
Your sons are not very different from anyone else’s who have gone off to seek their fortunes. They may be grandfathers themselves by now. Firmly entrenched in their own lives as has been pointed out. They just simply aren’t a solution or they would be with you on this journey already.
You must be doing an amazing job in taking care of your wife or your need would be more obvious to them.
I get the impression that the Area Agency on Aging is more helpful in some areas than others but you might give them a try. Ask them to come out and do a needs assessment for your wife. Ask them to give you something in writing if they can. Maybe that’s routine, I don’t know. But anyway if you can get that in hand you might be able to use it to discuss respite care with which ever facilities AA of Aging recommends.
I would also suggest you visit a NELA certified elder attorney if you haven’t already and find out what your options are going forward as it relates to any help from Medicaid for long term care. If you can private pay for care for your wife, great. If not then you need to understand the laws about how Medicaid will help pay for your wife’s care without impoverishing your own living circumstances and your own future.
Also see if your wife qualifies for Home Health through Medicare. Do you have this now? They will send a nurse once a week and a bathing aide a couple of times a week. You can ask that your wife be evaluated for physical therapy as well.
Don’t resist these small benefits as they really help overall.
It must feel very alone caring for your wife. I understand the support groups are helpful. Go to the Alzheimer’s website and look for a group near you.
Recognize that if you don’t take care of yourself you will be leaving your wife to manage alone. How is your health? I wish you all the best in taking steps to secure you and your wife’s futures. Come back and let us know what help you find in your community. Start with the respite but know that the need will continue to grow.
Being a caregiver means you have to be empathetic, and intuitive. And if she is incontinent, it means you have to be able to stomach the accidents that many caregivers see EVERY day. So, it's time to look for alternatives. Many Assisted living facilities and nursing homes take respite care patients. Start to call around to see who will accept her and for how long. (Some places have a minimum amount of time.) This costs money so find out how much in your area. Alternatively, you might bring in a live in aide to stay with your wife. If you do this, I would suggest you arrange for the aide to come for extra time while you're still there.
I traveled the dementia journey with my Mom, she was 96 at the time. My in-state brother could barely visit AND wouldn't go without his wife. My out of state sister needed a primer in how to spend time with Mom when she came to give me respite care . AND at that point Mom was in memory care assisted living. I urge you to consider professional help, not only during your respite time off, but after that as well. You should be having aides, etc before you keel over. PLEASE keep us updated. We all know how much physical and emotional toll caregiving takes.
You will get lots of ideas and help from the posters on this site.
Your son's are in their 50's and I assume jobs and family life. That is their job. Some can emotionally provide care and some cannot, usually son's cannot. If they are not stepping up to assist there is nothing you can say to change their attitude and feelings about this. So make plans for your wife to go into a facility for respite. Then think about having her stay there. I cannot imagine how difficult it would be to be 80 and providing 24/7 care. I was twenty years younger when I cared for my mom for the most difficult four years of my life.
Get the help you need. You have done wonderful caring for her as long as you have!
I think it's a bad idea. The boys and your wife already know this. Look elsewhere for respice.
Others here can offer some suggestions as to where to look. I'm sorry, that's something I just don't know about. Hang in there...