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CARENOTES | Past Carenotes | Let's Talk


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 - 09/27/11
Are there any resources out there for disabled caregivers?
I am a woman who has been disabled for about a decade and I am taking care of my 83-year-old father (after having taken care of both him and my mother).  My energy is very limited, which makes caring for his increasing dementia very difficult. 
Just knowing others are others there who are like me would help greatly, but to have information on how to maximize our abilities, our tasks, etc., would be phenomenal. 
I think what I miss most is someone to talk to; someone who can carry on a conversation.  Being virtually housebound is very isolating!
Thank you for any guidance you can offer


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Name: Kelly Burrel
Location: NC
Date: 09/28/2011
Time: 08:48 PM


I just would like to add that finding a support group once a week, would help to get out & converse with others in same ordeal. I know & feel your pain. So difficult to watch a family member just slowly diminish before your eyes.Can be so stressful & not rewarding at times. You could also contact local Department of SocialServices and see what elder service that thet could provide free of charge. And Definately this website is a great way to vent & ask for advice. Best wishes! KB

Name: Leslie
Location: Vestal, NY
Date: 09/28/2011
Time: 11:06 AM


I want to thank those who've replied thus far. It means a lot to me just to know there are other disabled caregivers out there. My disability is dizziness, imbalance and vertigo - for 10 years and little change in the severity. My tolerance has built up, but that's not the same as a decrease in severity. I have gone to dementia sites and, but it actually gives very little help or advice. Jonay - your info on the veterans' benefits is very helpful. I will look into that! I get a maximum of 4 hours a day in which to get 8-12 hours of work done. I can split it up or use it all at once, but I can never get over 4 hours without losing at least the following day to the vertigo. We just had flooding 3 weeks ago and the chaos is still very difficult for Dad to navigate. Our house is being threatened by a landslide - the house falling, not the slide onto the house. So, I have to be hypervigilant for that. And his health has declined. Plus, trying to put up food for the winter. It makes life challenging at best. So thank you! Just knowing you're out there helps so much. Leslie

Name: tj
Location: wv
Date: 09/27/2011
Time: 12:00 PM


Contact your local senior center or area agency on aging. They have caregiver support groups as well as other programs that may provide you with respite or senior care services. It's difficult to be a caregiver when the caregiver has issues as well, I'm well aware because I am a caregiver with a disabiity and can understand the need to talk to someone and how tiring it can be.

Name: Jill Lewis
Location: Ventura County
Date: 09/27/2011
Time: 09:17 AM


I can truly empathize with you- I find myself in the same position. My husband is 63 and he had a stroke in February. I am sole caretaker, and I have several health issues myself that slow me down. I feel frusrated by all his needs and demands, and at the same time, I miss him terribly. The man I loved so much and who offered me his companiionship for life is gone to me, and I too am housebound. I do have friends visit when they are available and I have a caretaker 4 hours a week. It restores a bit of sanity. I just discoverd this newsletter. I find comfort in knowing I am not alone-hopefully we can find strength together.Take care.

Name: Dianne
Location: Scottsdale, Arizona
Date: 09/27/2011
Time: 09:06 AM


I know what you mean. I am disabled and care for my 92 year old mother, and until last year, cared for my 89 year old father too. What works well for me is to break down my chores into workable small chore an hour. Beds are the first chore, then an hour later, emptying urinals, then an hour later, get the idea. That way I am not too exhausted before lunch even gets here. Caregiving IS very isolating and I have found that my computer keeps me connected to others like me, and gives me a base of people who understand what it is like to be a caregiver.

Name: Susan
Location: Midland, TX
Date: 09/27/2011
Time: 06:55 AM


There are several web sites dedicated to caregivers that offer advice and even chat rooms and blogs for on line conversation that I think would benefit you. Just search for dementia or Alzheimer's caregivers and I think you'll be pleasantly surprised at what's available.

Name: Jonay
Location: Grand Rapids, Michigan
Date: 09/27/2011
Time: 05:49 AM


Was your father a Veteran? There is a great benefit, but little known benefit, called Aid and Attendance through the Veterans Administration. Although a great benefit, it is very hard to get through the VA due to all the red tape. BUT, there is an excellent organization called Veterans Home Care, that helps veterans get this benefit. You can find out if he qualifies by calling the St Louis office: 877-390-6377.



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