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My husband is afflicted with Parkinson's disease and I have been his caregiver for 16 years. I can't do it anymore. What are my options?

 

Question:  My husband is afflicted with Parkinson's disease and I have been his caregiver for 16 years. I can't do it anymore. He insists there is no problem. What are my options? I'm not getting any sleep and when he falls, I can't pick him up. My health is being compromised and I'm at my wit's end.

Dr. Amy:  I want to congratulate you for providing sixteen years of care to your husband! That truly is amazing. And now, it is important that you get some assistance so you can get enough sleep and have some time off from caregiving. Getting help will likely also help your husband be safer. I’m concerned about his falling and wonder if that is something you could also address.

I recommend you arrange for an assessment from a professional. This will help you and your husband figure out the best care plan. If you are financially eligible, a social worker from the Adult Services Unit of the Department of Social Services in you county will conduct an assessment. You might also choose to hire a geriatric care manager. They are experienced in helping people assess their care needs and will also help to arrange for the services. They would also be helpful in explaining to your husband how important it is that you get assistance and respite. A third option for an assessment is a home care company. They will come out and do an assessment to see if home care services would be useful. They may also be able to refer you to other appropriate services.

Caregivers truly are our unsung heroes. You have done an amazing job caring for your husband and it is important that you get some relief. Only then can you take the time you need to care for yourself--as well as continue to take good care of your husband. A professional assessment is an excellent starting point to getting the appropriate care you need. Good luck!

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Thoughts and stories from others
  1. April 19, 2012 at 10:07 pm | Posted by J.

    16 years as a home caregiver deserves a medal of honor. I've been caring for my mother who fractured her hip last year. She's been home for 5 months now and is still unable to walk. She is very stubborn to say the least when I suggest she get the proper physical therapy she NEEDS! Every morning I have to change her diaper, change the wet bedding, bathe her, make sure she doesn't develop a rash or sores, try to get her to eat right and take her medication. My Mom will spend most of her time in fromt of a TV and she refuses to do any light exercises I plead with her to do. I'm now suffering from lower back pain trying to support my Mom as she walks from one end of the house to the other. It takes my mother and I almost 30 minutes to walk 36 feet! She never learned how to use a walker and can't use a cane and our home is too narrow for a wheelchair to fit through the hallway. I had to quit my job to be with her all the time. I'm becoming extremely depressed, angry and getting more impatient by the day. I'm 44 and I feel like I'm under house arrest because I have to be a her side constantly. I love my mother, but the stress of caring for a (stubborn) invalid is driving me over the brink!

    Reply

    • May 8, 2012 at 5:01 pm | Posted by Amy D'Aprix

      It sounds like you are doing an amazing job caring for your Mother. And it sounds to me like you could use some assistance! Are you able to afford a little bit of professional home care so that you can get a bit of a break? If not, I do think it is important you talk to someone about your situation. Clearly this is starting to impact you both physically and emotionally. In the beginning of caregiving we often use "crisis behavior"; we completely change our lives and use all of our energy for caregiving. We can do that for short periods of time but it is nearly impossible to keep that up for very long. We need to think of caregiving as a marathon - not a sprint! If you can't afford professional home care, even for a few hours a week, make sure you call the Adult Services Unit of your County Department of Social Services to see if you might be eligible for some assistance through them. In addition, contact your Area Agency on Aging to see what services might be available in your area. And, if you belong to a faith community, don't forget to talk to them! Often churches and synagogues have volunteers who might be able to help you. I know this may seem extremely difficult right now, but with some creativity and some persistence you can get help. Warmly, Dr. Amy

      Reply

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