I just discovered this support group and am so happy to finally find a group. I am the caregiver for my husband who has Parkinson's disease and is also legally blind from macular degeneration and glaucoma. I have been caring for him alone for eight years and finally, two weeks ago, insisted I needed some help. We are very fortunate in having long term care insurance and so can afford to have someone in to help me. The insurance company sent out a nurse to do an assessment and determine how much help we were eligible for. She approved us for a home health aid for 24/7 and a homemaker 8 hours a week. My husband is very opposed to having help in the house but I have gotten him to agree to 4 hours two days a week. He is very unhappy about this arrangement and I, of course, feel guilty insisting.
Thanks for letting me vent

Hart,
It would appear you need to have some help. It is unfortunate you are feeling guilty about something that is helpful for both of you. Being a caregiver 24/7 must be difficult and demanding. Hopefully your husband will realize having help makes you a better caregiver for him in the long run.

Thank you for sharing.

Gerry

Hello Hart

Welcome to NT. You did the right thing getting an assessment and seeking the help you need. Please don't feel guilty - you are doing the best thing for both of you.

Maybe once your homemaker person gets settled into the routine you can use part of the time while they are there to focus on doing something special with your husband. If you can show him that having someone help out frees up time for you to devote just to him it might make him feel better and more accepting. Even if it's something simple as listening to music together, or making a special morning/afternoon tea and instead of jumping up to do another chore you can just enjoy the time spent together.

The other way to approach it is if he is pragmatic by nature is to say you've been contributing for years to health insurance and that this was what you have been paying all that money out for and it's time to use it.

Please try also to take some of that extra time to take care of yourself - it's very important that you don't get run down. How would your husband cope if you became unwell? I've known several carers this has happened to and it becomes an emergency situation when no support is in place and the person who normally does the caring ends up in hospital and their partner has to go into nursing care until their carer has recovered.

All the best for things working out.

Dear Hart,
My husband has Parkinson's too. He also is reluctant to ask for help, though the help is actually for me, not him. I'm having varying degrees of success in getting this point across, because if you and I break down, Hart, the whole situation goes pear shaped. I sure hope you can get some help and he won't be too upset with you. This is so hard, and I know it's these men who are bearing the brunt of something horrible that's robbing them of the things they use to defined themselves. It's a tragic disease, but we have to not feel so guilty that we can't acknowledge that it's robbing us too. Hang on and come here to be cheered. --Essie