Totally burned out from caring for my disabled husband. Not sure what I need - but I’m so tired! My grown daughters are helping to pace him into long term care but that takes time. Any ideas on how to cope while I’m waiting. I do have in home health care, but it’s not enough help!
Have you checked with your church to see if they have volunteers that will come sit with him so you can get out for a while to do things you enjoy? You can also check with your local Shepherd Center as they DO have volunteers that come out to sit with your loved one, and your Senior Services should also offer free volunteers.
Your story sounds a lot like mine as my late husband had a massive stroke at the age of 48 and developed many health issues due to that along the way including vascular dementia as he got older. He died at the age of 72.
I had to make sure that I was getting out occasionally with friends for lunch or supper, take a walk or even just sit outside on my patio just to get a break.
Next time your husband has to go to the hospital for any reason, make sure that the social worker knows that he cannot come home as his care is just too much for you. They will then have to find placement for him.
Hopefully though he will placed long before then.
Hang in there. There is light at the end of the tunnel.
If your husband is a Veteran. Contact your local Veterans Assistance Commission and find out what benefits he qualifies for. It might be a little or a LOT depending on where and when he served. (It could be a little as getting some help and all his incontinence supplies to renovating your house to make it so he can remain at home, or being able to place him in a VA facility if you have to place him)
If he has other health issues he may qualify for Hospice. With Hospice you would get a Nurse that would come weekly, a CNA that would come at least 2 times a week to bathe him and order supplies. You would be able to ask for a Volunteer that could come and stay with him while you run errands for yourself.
You would also get the equipment that you need or will need to safely care for him.
Medicare, Medicaid and most other insurance will also cover Respite Stay. (about 1 week each year)
You hire more caregivers or extend the hours that you currently have help.
Since your daughters are looking into long term care for him they could ask if any that they are considering would be able to place him for a Respite Stay. The cost would be "out of pocket" but it would give you a break.
Are there any Adult Day Programs in your area? If so it would be great for him and great for you. Generally the programs pick up in the morning, provide a breakfast, a lunch and a snack and a variety of programs that allow interaction with others. If someone wants to participate that is great but they are not forced.
He will be placed and then this burden will be lifted from you.
I totally agree with Funky. Please see if you can find respite care for your husband, so that you can take a well deserved break!
Wishing you peace as you navigate through this difficult time.
I hope you will update us when this is done.