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Introductions: Are you caring for someone with dementia?
My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.
In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.
As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.
I wish everyone struggling with this disease and their caregivers and families strength and peace.
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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
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2 Reactions@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.
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2 ReactionsLying or fibbing to anyone can have its consequences. In my family experience lying is an easy out than dealing with the negative of telling the truth. But it has its down sides. Eventually for what ever reason my family lied to me, I always found the truth and that made me madder than if they bothered to tell the truth. As a child my parents excuse was it was for my own good. But as I got older the lying did not stop. It just became the easy way out. Even when I call out on knowing that they lied. They seemed not to either care or understand the consequences that lying on our family relationship. Even as a counselor when working with clients and their family I stress that lying will bite them in the butt one day, I believe that one should tell a loved one the truth. It might need some creativity and thoughtfulness but for you and others involved it would be emotionally satisfying. You can now rationalize about the lying but to you and others involved it will have an impact . With parents or loved ones that are losing their memories and get upset easily lying maybe the easiest solution for you but again it will impact your relationship with other family members, relatives, friends and yourself. If you need to discuss other concerns and would like to run it through this group please do. Your health is a concern for all of us on this connect network of concerned people
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1 ReactionCan you go to your nearest hospital and ask for a list of caregivers for your husband? Or any agency that deals with seniors. You should not have to go to unreliable resources and eventually let you down
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1 ReactionI am new to this site and after reading your post, knew I found the right place to vent and share.
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1 ReactionWelcome 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,
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1 Reaction@safetyshield I agree. Lying just leads to some really tough situations, especially in caregiving. I always made sure I told the truth. I may not have gone into all the tiniest of details, but I never wanted anyone to come back and accuse me of not sharing. Plus there was always a huge amount of sharing of what I said to anyone between folks so they 'compared notes' on me constantly.
When it came to my wife we made a pact very early in her journey she could always count on me to tell her the truth. It eased her worry a bit.
And on an unrelated, but related note, coming from a very dysfunctional, alcoholic family communicating was not always my powerful suit -- but I sure did realize lying just screwed up all communicating to the point of damaging yourself and others.
Peace and strength,
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1 ReactionHi @tsoy. For quite a long time I was able to do 1-person transfers even when my wife was unable to assist in much of any manner. In our case a bear hug and transfer worked for quite awhile.
I worked hard to get her to agree to let me do a transfer --- only 1 a day --- before she needed it so she knew what was going to be coming later. It seemed to help especially in those early days of 1-person transfers.
When we went to 2-person transfers it was a caregiver and me. They were a challenge since we were then trying to coordinate three peoples' motions, but it got the job done. 2-person did not last long, just a couple of months, before she was unable to withstand the efforts needed to move her, even with two people and she refused --- REFUSED to use the Hoyer lift we had. She saw that as far too much of an indignity but that was just her and her fighting spirit.
It still amazes me how much she had to give up and accept...
Peace, courage, and strength
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1 ReactionI don't really know but it seems to me you should see the dermatologist just so you know for sure it is not something you can do something about. If he says it's nothing skin wise then you know it is the Aslzheimer and we will work on distracting techniques. My question is; my sister lives with my husband and I and has had Alzheimer's for about 5 years. We just got it diagnosed last month (9/16). She has not said another word about it since then. Do you think I should bring it up to ask her how she feels about it? Does she want to tell our siblings? We have already done the DPOA, wills etc. what do you think? Does she really need to talk about it? Should I push for her permission to tell our siblings?