@nanax2

Thank you. I think I was just confused by the last sentence in caregiver49's comment. Maybe I read it too fast, or maybe I am just tired. It seems as though we're all soooo tired.

Hello, nanax2. Thank you for your prayers. I will also try to remember to pray for you and the others here who need strength and wisdom in the midst of difficult circumstances. A little about my journey with my mom: I am her only child (and she has no husband) so there's no other family support (except 2 sisters who live across the country and visit once a year.) My mom is 74 and started showing (or I started noticing) symptoms of AD about 9 years ago. She has lived with us for 8 years and has taken 2 different Alz. meds for about 6 years. Two years ago she took part in a clinical trial of an experimental med., which seemed to help a little, but as soon as she discontinued it, we noticed some decline. Her short-term memory is increasingly poor and most long-term memories are completely gone (although she surprises us once in a while!) Although she interacts happily with loved-ones, she doesn't remember significant shared experiences. Her physical health is good and she moves about the house without any help. One of her symptoms is OCD, which manifests in her taking bits of paper towels and wiping spots on counters (among several other non-destructive but annoying behaviors) ---which drives some in my family crazy. She has never really exercised, and I have a hard time convincing her to walk outdoors since she doesn't like to walk outside if the temp. is less than 74 degrees, or more than 78 degrees. However, my mom is generally good natured (with an occasional childish outburst: "You're not my mother!" My struggles are classic: some mild depression, impatience, grief, loneliness, and sometimes anger. I have high expectations of myself and tend to compare myself with what a loving, caregiver-daughter "should be." My husband and family struggle too, but they realize I carry the heaviest weight and they try to give me breaks once in awhile. I am most content when pressing into Jesus, my Rock, and when I am grateful for all that I've been given. I know it will be a long journey and I'm praying for the love, the strength, and the joy that I'll need to finish well. Thanks for asking.

P.S. I have been greatly helped by reading the posts on the "Alzheimers Reading Room" : http://www.alzheimersreadingroom.com/

@kmkm

I can relate to most of your post. My husband, who is 72, has dementia. I started noticing changes in his early mid sixties, but he was not diagnosed until four years ago. I see similar symptoms in him to what you see in your mother, and I feel the same desire to be the best caretaker and best example I can be. Younger people see us, and I feel it is so important to be a good example to them, so that, when they care for a loved one, they may have learned, from us, how to handle their loved one gently and with respect. I think the most difficult part of this journey is that it can be so long, and so draining. I have no help. The kids live in different states and visit only once every year or two. His surviving siblings are unable to help. My siblings are older than either of us, and have health problems of their own. Our friends seem not to notice that we're no longer out and about much. I think that's the other very difficult part of all of this. Yet, I try to keep a positive attitude and feel thankful for the easier, better days.

Wishing you, and all of us, strength for the journey.

@nanax2 how do you deal, cope with your bedridden Mom? My Mom can still walk with someone holding her hands and walking backwards in front of her, well she really scuffles her feet slowly. Her gait is VERY slow and her balance is very BAD. I worry I will not be able to handle her at home anymore by myself when she is no longer able to walk at all. I mean How would I get her out of bed to bathroom to living room and back again? Will she have to remain in bed all the time? How can one person change her? Got any pointers?

Thanks and hang in there

Hi @tsoy. I hope your day today dawns an OK one!

My wife lost her mobility for almost the last year and a half of her fight. I will say it changed fast and was something she fought hard against, but finally she could only go from bed to wheelchair, then just bed.

In the beginning I could manage one-person transfers with her from bed to chair, but then after awhile that was simply not possible so it would only work with two-person transfers. She did not like them, but she accepted them so she could be in her chair for some of the day.

I learned a lot about how to care for someone in bed all the time. How to change the bed with her in it, how to 'modify' a couple of her old gowns (I had to cut them up the back), hairwashing, how to change her diaper (we always were sure to call them her 'briefs') on my own, and a few others. Necessity is the mother of invention and while my efforts were often just jerry-rigged, they worked for her.

When you want any specific hints let me know.

Peace and strength!

Great question @tsoy. Getting pointers from the community will be helpful to many. I started a new discussion to gather ideas. See the discussion
- "Your caregiving tips & "How to" video demos for caregiving at home" http://mayocl.in/2d5JBaj

Let's gather our caregiver tips on this Connect discussion: http://mayocl.in/2d5JBaj

@tsoy, when it started to get hard for Mom to get to the bathroom in time, we began using a commode and kept it in her bedroom. She didn't like it but it did beat the alternative of not making it to the bathroom. We used this method for a few months until it became impossible for me to even move her from her bed to the commode. We began using briefs and bed pads and through the long process of trial and error, we found that TEVA products work the best. We use a brief and a pad each time she is changed. This was not an easy transition (emotionally) for either one of us but we made the best of it. TEVA products are the very best and nothing else I've tried compares. Mom was a hospice patient for six months and "graduated". During this time, we were able to get her a hospital bed (Medicare covered) with a wonderful air mattress that keeps the air flowing so she doesn't get bed sores. When she graduated from hospice, we used some of Mom's money to buy the hospital bed, air mattress, and beside table at a discounted price.

During Mom's time under hospice care, I learned how to change Mom's brief and bedding without moving her out of the bed. Brief changing: have your loved one lie on their back with their legs bent, undo the tabs on the brief and roll up one side of the tab and place it under the middle of their back, roll the patient on their side, clean them and then remove the brief. While the patient is still on their back, slide a new brief (with a pad inside) under them a bit, roll them on their back and adjust as needed.

I hope that answers your questions. If not, let me know and I'll answer what I can.

I am new to this site and after reading your post, knew I found the right place to vent and share.

Welcome to Connect @foxylady42. Please tell us a bit about you and your caregiving situation. We look forward to getting to know you.

Hey @IndianaScott, I'm all about learning how to deal with situations BEFORE I need the knowledge! Any pointers you might pass along would be greatly appreciated. I just don't know if I will be able to handle Mom if she gets to the point of not being able to walk at all. She will soon be 94, and with the dementia she does not respond to any requests or demands...she does not help at all any more with getting into/out of bed or chairs or toilet. If she gets to the point of needing 2 people to handle those things, I may need to quit working. We will not be able to afford 2 paid care givers.

Thanks,