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Up-to-the-Minute for Caregivers

13 Responses to Up-to-the-Minute for Caregivers

  • Banza says:

    Dad is now in his 8th year of Alzheimers. Caught it at the beginning of stage 1. No meds will make it go away. In yr #5 we noeictd he shuffled just a tad while walking. Well, it gets worse. He can not walk as of 3 mo ago. Is 100% incontinent now, remembers only me, my mom, and sister by name. Barely talks, cannot converse anymore. He is entering stage 7. My advice if you have it is take vacations, write down memories to your kids, make peace with God, enjoy every sec with your family, its vital

    • aromick says:

      My heart goes out to anyone who is dealing with a loved one suffereing from AD. Such a thief, stealing from the victim and family. You are right, get as much written down about all of your lives before it’s forgotten. Thanks for reading. Ann

      • aromick says:

        While the ideal is that lots of family help care for the AD victim, but that would be unusual. Usually the one closest does the caring. I am in my 9th year of caring for my husband and most of the information in my blog is directed to the caregiver through my eyes: that of a wife to a husband. And yes, if you have to have help in caring for him at home, keep good records and it is tax deductible. List supplies and manpower under medical getting help’s SS # and receipts of your supplies. Thanks for reading, Ann

  • Donna says:

    Banza, I am sorry about your dad. We travel with my mom and in Stage 4 right now. We take lots of pictures of our adventures. My mom was just diagnosis in January, but I knew something was going on. My sister’s ignored the signs. I am also putting our adventures in a book as well. I am always looking for others that are full time caregivers to talk with.

    • aromick says:

      Donna,
      I received your comment to Banza. My name is Ann and I am the wife-caregiver to my husband Ken and have been for nearly 10 years. Sounds as if you are doing a great job with your mom. It is a special calling to be a caregiver. The best to you. I am writing a book about my experiences which should be done about the 1st of the year.

    • aromick says:

      P. S. That photo coming through is my daughter. Somehow it slipped back into my spot and we haven’t made the change.

    • aromick says:

      P. S. again. My blog is http://www.alzheimers24-7.com and I write about Alzheimer’s.

  • Donna says:

    Aromick, Thanks for the comments! Lately, I have been a bit bitter and angry because it is hard to find others that care for a loved one 24/7. I was on a discussion board but most of the individuals were ones that checked up on their loved ones or lived far away. I had to leave the site due to comments I couldn’t take anymore.

    I read an article about caregivers feeling alone and many times I do. I have friends that have been down similar paths and I lean on them.

    Good luck with your book! I have read 2 books so far and found neither one that helpful at all. I will be working on mine until mom passes. My goal is to share the adventures we have and the fun one can have if we forget about the other stuff that happens.

    My challenges would be easier if it wasn’t for the outside sources. My mom doesn’t want everyone to know she has Alzheimer’s so most of her siblings do not even know.

    The picture didn’t come through. I take lots of pictures, we are working on scrapbooks and getting an electronic frame so she can see all of the pictures.

    So is this your website?
    Donna

    • aromick says:

      Donna, I know the feeling. So many people call themselves “caregivers” who visit their loved one in a care facility. They aren’t caregivers in the true sense of the word. They manage the caregiving and that in and of itself is a big job, but it isn’t hands-on caregiving. Have you read The 36-Hour Day. A good reference book even though it is geared to Alzheimer’s. I understand what you are looking for. In my blog I have discussed some of the experiences I have had and how I have handled them. I have not discussed really personal things that would cause my husband to be embarassed if he weren’t ill. Bathroom issues are covered in any of the how-to books. Hope you find some help and support in your search. You are not alone you just have to find the right mix. Ask around for “Hands-On Caregivers.” That might help

  • Donna says:

    I read the 36-Hour Day and felt it was it was of no use to me. In fact, I was very disappointed in the book. The book provides a lot of sources, but most of which do not apply to me and won’t.

    My mom has extra challenges in that she broke her leg 2 years ago and it is not going to heal. So I have an extra challenge that many do not have. And I find most books are more from the medical point of view than the one that does the caregiving. The 36 hour day considered anyone that did anything even long distance as a caregiver and that really disappointed me.

    I have unique bathroom issues, but I will admit we have had some of the funniest things happen in the bathroom.

    What I need are realistic sources in terms of dealing with a physical disability and finding affordable options to help me. What I find are things that are expensive and outside of mine and my mom’s pocketbook range. We had to invent our own way of loading my mom into an F250 without spending $3000 or more to have the truck altered. So for me there are just no realistic sources in the books I have read. They talk about daycares, assisted living, and nursing home type situations.

    So I am in a very unique situation. I will check on the Hands-on cargivers because that isn’t a term I had considered.

    I appreciate you chatting back and forth with me. I am sorry that you have to deal with it in regards to a spouse. It is sad to watch a parent, but I can only imagine how it feels to watch a spouse. I am fortunate that my spouse will assist me, he has many challenges with my siblings and at times understanding the disease, but he will help me with mom and for that I will always be grateful.

    • aromick says:

      Donna, I have the 36 Hour Day but haven’t made much reference to it, but I agree that their defination of caregiver is stretched way beyond who is truly the caregiver. However, I am sure it makes a lot of people feel good about their contribution no matter how small. Sorry that you didn’t find much of anything there that could be of help. I agree most adivce is from a medical point of view which at times is not what a hands-on caregiver is looking for. There is another site I thought about as a suggestion to you. It’s caregiving.com They cover many different topics and illnesses. Some posts are helpful and some are not, but it’s worth a look.If their htpp is different I’ll send it along later. In hands-on caregiving I am certain that most caregivers have unusual problems with which to deal: yours being that you mom has mobility problems because of broken bones. Because of your unique circumstances it would be difficult if not impossible to exchange ideas with other caregivers dealing with a disease but without broken bones and immobility. I understand how frustrating you must feel when you hear complaints from long-distance caregivers or even those who are near but their loved one lives in a facility. What you are looking for is someone who has the same experiences you are having, the same feelings wanting an understanding shoulder to cry on. I know those feelings — the biggest one is feeling alone. Even if the house is filled with visitors once they leave you are alone with the problems. Do you have family who can/could/should/would but won’t nearby? Anyway, if you need I’m here at least once a day and while I don’t have the same problems or disease I have had 10 years of caregiving just with my husband and more caring for my 2 inlaws and 3 with my mother — all AD victims. Last question: Is there money for you to hire someone who could help you during the day when it comes to cleaning and bathing your mom. For the last 3 years (after an auto accident forcing me into the needed help) I hired someone to help and I will say I am so blessed in having this kind of physical assistance.

  • Donna says:

    Aromick, it sounds like you have a lot of experience in caregiving and been at it far longer than I have. I lived away from my mom for over 20 years, but I provided a lot of financial support and assistance in paying her bills.

    I know I am in a unique situation and I have a friend that was in a similar situation we compare notes when we can. She is trying to get her life on after being a caregiver.

    I will check on the site you provided and see how it is. Mostly, I have started to depend on my friends that still talk with me. But you are right, you can feel so alone even in the crowded room.

    When it comes to bathing, mom and I do that together. She washes what she can and I do the rest. Trying to say it so it would not embarrass anyone. My mom would rather I not spend my money on that. I provide financial support and my mom would rather travel. My mom loves to go on trips and while routine is normal for most Alzheimer’s patients, my mom loves to travel. So if we sit around her home too long then I have more problems than if we travel. We have a routine for rising and bedtime, but in-between she loves to travel. So any free money we take and try to travel with her in my 5th wheel.

    I have 3 siblings. One that lives nearby is having health issues and of no assistance. My other 2 siblings live far away. Sadly, they do not call my mom as frequently as they should either. Standard family situation.

    Thanks for listening to me! You sound like you have your hands full.

    • aromick says:

      One more reference for you. I often read posts on the Alzheimer’s Reading Room. One person is very good. Carol Larkin is a credentialed manager of a geriatric service helping and training people who are caregivers. She just posted an excellent article about bathing which you don’t need at this time, but you might check her out and see if you can contact her directly for some help with your particular problems. She lives in Texas.

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