My mom with end stage MS moved in with me last July. She is bed bound and requires 100% care. I'm alone and going crazy!

Started by

Wondering if anyone else is in similar shoes. I moved my 74 year old mom in with me after a terrible stint in a nursing home where she was neglected. She requires 100% care. She is quadrapalegic, needs to be turned every few hours, diapered, meds, breathing treatments, grooming, and all that comes with that. My family visits on occasion but is not involved in her care. They say they can't handle it. I am single, just happen to work from home in an administrative position which allowed me to bring her home. I feel alone (and I am!), angry, frustrated, couped up, tired. This is so difficult! I can only find two support groups in my area - one meets once a month and the other meets twice a month on Monday during working hours so I can't attend. Going crazy here. I do have someone who comes in occasionally so I can get out but it's just not enough. This is draining. :)

4 Comments

Hugs to you! What an extremely challenging situation. First, you absolutely must get some help. That is not optional if you are to retain your health and sanity.

Have you considered bringing in Hospice? Since your mother is in end stage she may qualify and they are a wonderful comfort and help.

The other thing I suggest is calling your county Social Services and asking for a needs assessment. Obviously your mother needs A LOT of care. They can help you determine how to get it in your home. How was her nursing home being paid for? The same funds could be applied to getting help in your home.

You are doing this because you love your mother. Don't let yourself get so burned out that you lose sight of that. Please, bring in some help.
Jeanne said it so well. I would be on the phone to hospice tomorrow. You may also want to look into hiring a professional caregiver to help you when hospice is not there. There are many good caregivers out there that will make it easier to keep your mother at home longer. You would not be so alone doing difficult tasks.
Thank you both! I forgot to mention that my mother is on hospice. She's hanging in there and has been recertified for another 6 months. Hospice has been wonderful and they offer respite care which I have not taken advantage of but may need to. Finding this site already helps. My mother requires such a high level of care - finding help has been very difficult. The caregivers thus far have not been dependable. Seems easier not to count on anyone, unfortunatley. I'm simply feeling burned out and I have a long road ahead of me. Long enough anyways. Thanks for sharing :)
All the answers above are excellent. Did you check with the MS Society in your city/county? They may also have assistance available for you.

You need to take advantage of as much respite as you can get. Try to get a weekend off once a month to recharge and relax!

You have to take care of yourself first to be the caregiver your Mom needs. I know it is a difficult 24/7 for you both and I am sure your Mom appreciates all you are doing. Best of wishes.

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support