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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 - 08/16/11

I have been taking care of my dad for five years. He has Alzheimerís and Parkinsonís and had a stroke. In the beginning, I would leave work and go straight to his house, only to find out from neighbors that he had been trying to get into parked cars. I know he was looking for his car. He also was found on the highway after leaving his girlfriendís side for a moment. We found him three days later at the hospital. Thatís when I decided to move in and leave my job. I have exhausted all my money and wonder why I have done this. I know I promised my dad I would never put him in a nursing home. His girlfriend left to stay with her daughter in Florida and then passed away from emphysema. Never told my dad because he never asks about her. Itís sad because he does not know what is going on. He does not wander now that his mobility is getting worse. He fell on Motherís Day when the aide was trying to get him out of the bathroom. His knees are real bad. I donít know if I should still make him walk the short distance to the bathroom, but I donít want him to be completely bedridden.

Does anyone take care of someone that is totally bedridden? I need suggestions on how to take care of him in that way. He has the hospital bed and air mattress. I am just so afraid if he stays in bed more he will start getting bed sores. I know it will eventually happen as he is getting weaker.


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Date: 08/20/2011
Time: 06:11 PM


Promising a loved one you will never place them in a nursing home is not realistic. You do yourself and them a disservice. You are at serious risk of illness yourself and then your loved one needing to be placed in an emergency situation. You may then have no input in the decision. MANY caregivers die before their loved ones due to the stress and lack of caring for themselves. If your father is falling even with help, it is time to be realistic. It's a very hard thing to do, but do what is REALLY best for him. If he's as bad as you say, he probably will barely even know you've moved him. contact the office on aging and local hospice for help.

Name: Louise
Location: Long Island, NY
Date: 08/16/2011
Time: 08:45 PM


You are a very good daughter for doing all you can to help your dad. But sometimes promises need revision. Your dad has slipped into a kind of oblivion and his body is rapidly failing. A nursing home will provide him with a team of professionals to assist him and keep him comfortable. You've done your best, even providing your dad with an aide to help him. But now he needs more help and you need to regroup. It is possible he won't even be aware of the change in care, but it will make a big difference to you. Becoming bedridden is inevitable due to the advancing Parkinson's. Unless he can get physical therapy, his muscles will continue to weaken. He will get more help in this area in a nursing home if his doctor deems it appropriate. I am very sorry for all you're going through. My husband also has Parkinson's and dementia related to the medications he is taking. This has been going on for over 10 years, and it seems to have worsened dramatically in the last three years. I know how hard you are working to find solutions to your dad's problems, and it sounds like you've done all you can do. Parkinson's has no cure, the stroke made things even more complex for him, and of course Alzheimer's by itself requires full time vigilance, as you've discovered. Reach out to Parkinson's research organizations for more information if you are determined to keep your dad at home. They are equipped to offer information about how your dad can qualify for more professional assistance in the home. Senior organizations in your area, and even the public library, are resources that can offer you a wealth of information that may help your dad. Good luck and bless you for being such a good daughter.

Name: Veronica
Location: AK
Date: 08/16/2011
Time: 08:14 PM


I'm so sorry, just make sure every two hrs you turn him and check for bedsores.

Name: Ava Ladell
Location: Louisiana
Date: 08/16/2011
Time: 04:30 PM


First, call the Hospice organization in your area. They except patients that are aged now and will be a big help to you. Then check out the homes in your area. I know you promised, but there are people at the nursing homes that are better equiped and more qualified to care for him. You may not be the best person to do that. I know from experience. Good luck!

Name: Katy T
Location: Ky
Date: 08/16/2011
Time: 08:06 AM


I have been taking care of my mother for 10 years. She is paralyzed with MS. She has an air mattress and is in bed 90% of the time. She has a 2nd tier air mattress and does not get any skin breakdown. I get her on a Portable Toilet twice a day-she wears a Foley catheter for urine, I try to get her in her wheelchair at least once a week-but she is very weak so she sits for about 30 minutes. I keep her bed elevated must of the day. I feed her in bed because it is easier for her. She also has dysphagia so eats pureed foods and thickened liquids. The key to bedsores is to have a alternating pressure airbed. Hope this helps. Katy

Name: Joan
Location: MA
Date: 08/16/2011
Time: 06:28 AM


I will say only one word "honor".  The honor comes when you do the right thing. It sounds like the right thing to do now is give him the respect he deserves and place him where he can be cared for, and you can relax a little.



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