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Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 06/14/11

I am a caregiver for my husband who has Parkinsonís disease. He has other physical problems and is in a wheelchair. How do you deal with yourself, your emotions, making the shift from being a couple that was very active, in a very good relationship, with good conversation? How do I make the emotional shift from some of my dreams, some of our dreams, to the daily routine of taking care, doing, driving, becoming more and more responsible for his care. Some days are so quiet, isolated. I donít know quite how to handle how much our life has changed because of the illness. Some days, I just feel very tired and overwhelmed.

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Name: Mary
Location: Ohio
Date: 06/14/2011
Time: 09:58 AM


Caregiving is definitely a mindset. You must want to do it ... or change how your loved one is cared for. You will not be able to do a good job if you let circumstances turn you into a regret-filled human being. Life is what it is right now ... this is your life right now, no matter the sacrifices or changes you must make. Reverse your role and think of what it would be like for your husband to go through this. You would want loving care from him. I always felt people put too much emphasis on the emotional part of caregiving and definitely not enough on just doing what needs to be done so that when it's over you will have no regrets as to how you did it. Sorry to be preachy but if your attitude isn't in tune with what needs to be done you will not be effective as a caregiver. I did it for 16 years with my Parkinson's husband and then my Alzheimer's mother and both died at home in an atmosphere of support. You can do this; isolation is what we make of it. There's the telephone, newspapers, internet, etc., etc. Sorry to sound preachy but rise above negative thoughts and definitely stay away from negative people. They bring you down and can suck the life right out of you. Only you know what you want to accomplish so just do it.

Date: 06/14/2011
Time: 09:41 AM


My wife had a brain tumor removed and has been confined to a wheelchair ever since. She has no use of her left arm and hand and her ability to carry on a conversation is limited now. The toughest part on the caregiver who is healthy is to move to this part of life. We no longer bike ride, go camping or just go out to eat. While it is not easy, one has to treat it somewhat like a new job. You now work as a caregiver and you world revolves around that. BUT, you must also get time for yourself; visit friends, go out to eat with them, take in a movie. The caregiver still must maintain a semblance of normalcy eventhough it really isn't in the full sense of the word. The good thing about this for me is my wife understands that I need to get out and do things and is not resentful.

Name: Kathy
Location: New Hampshire
Date: 06/14/2011
Time: 08:28 AM


Can you find a support group that has wives in the same position you are in? Some support groups will arrange for your loved one to have care so you can go. My mother was in your same position and once she got out and talked with others, she found she wasn't alone and that many were feeling the same way and it helped her. My Dad passed away a year ago and she still goes. They told her she is a valuable member to the group! Good luck my dear, bless you.

Name: Penny Egenes
Location: Cypress, Tx
Date: 06/14/2011
Time: 07:16 AM


K, I am also a caregiver for my husband who has Parkinson's disease. He also is diabetic and has recently been diagnosed with diabetic amyotrophy, which has debilitated him more in the last 9 mos. than Parkinson's has in the previous 12 years. We traveled as much as we could for as long as he could. Now traveling is very difficult. As far as dreams, we have had to adjust our dreams to focusing on quality of life and living one day at a time. I also have many days when I feel so overwhelmed and exhausted. Taking time for yourself is a must, but somedays it is impossible. Loosing his mobility, my husband has had to adjust his interests and the things he does. He has had to find new hobbies while having to sit. It is not an easy life as a caregiver, but you can always look around and find someone else who has it worse than you do. I would love to talk to you or email, but not sure how to reach each other through this site. Take care of yourself!

Name: Michelle
Location: Fairfax VA
Date: 06/14/2011
Time: 07:13 AM


It is hard enough seeing relationships change due to caregiving, but when that person is a spouse, you change that relationship with the person you might normally go to for support for just these issues you are feeling. A few years back I attended a WellSpouse presentation that discussed so exactly your feeling. If there is a WellSpouse group in your area I would check them out. If there is not, I might suggest contacting them anyway. They may have useful literature or referrals for getting the support emotionally that you need specific to caring for your spouse.

Name: Louise
Location: Long Island, NY
Date: 06/14/2011
Time: 06:22 AM


My husband has Parkinson's (and dementia) as well and I understand your feelings of loss and dreams vanished. I've been caring for him for over 10 years, finally giving up my career seven years ago to spend more time with him. I was lucky enough to have an attorney who recommended that I consult with an eldercare attorney. His suggestions for my husband's care are beginning to bear fruit. I have enrolled my husband in adult day programs at the local "Y" and the VA center near me. The VA provides pickup/drop off transportation for my wheelchair-bound husband. He participates in gentle exercise programs, plays cards when he's able with the other veterans, and is given his medications when it's time. These outings give me the break I need to simply relax, catch up on errands, talk with friends on the phone, and visit with my parents. I also have a nursing aide who spends time with him when needed to bathe, groom, dress and keep him occupied while I do laundry, cook, clean, etc. Like you, I've seen my dreams for a happy retirement evaporate, replaced by activities I never expected to perform. Luckily, I have friends who allow themselves to be my sounding board about my feelings. Although I've resisted it so far, I'm sure a counselor specializing in caregiver issues would be of tremendous help. For now, I keep the memories alive of all the things we did together in our 45 years of marriage. Perhaps the cure is right around the corner...

Name: Dorothy
Location: VA
Date: 06/14/2011
Time: 06:07 AM


Dear K, I understand what you are going through. Your role as wife must feel as if it is being overtaken by your ever increasing role as caregiver. Your need to have some space for yourself -- a weekly outing, social contacts, hobbies. Keep your individuality alive. I have found a lot of support in the Well Spouse Association, the only support organization just for spousal caregivers. I encourage you to check it out at Best wishes to you. Dorothy

Name: Bren
Location: TN
Date: 06/14/2011
Time: 05:52 AM


Find a caregiver support group!!!!!! Mine has caregivers dealing with Alzheimer's, senile dementia, general aging decline, and Parkinson's. And we all have a lot in common. You can vent, find help for problems, and lots of wonderful moral support. My husband has PD, and I know all those feelings you expressed. I've worked thru some, am still working on others. You're NOT alone!!!



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