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MariaIL Asked October 2022

Seeking ideas or experience regarding memory loss progression. My DH cannot seem to remember things moment to moment. Any advice?

DH is aware, knows where he is, sounds ok in any given moment but now cannot keep almost anything in mind. Almost as if mental processing is not happening….Example: Driving to store 5 minutes away he asks where are we going? He cannot locate common objects in kitchen. This goes on all day about everything. He does not seem bothered by this, I guess because whatever it is disappears almost immediately. I am anxious to know what happens next, if anyone recognizes this stage so that I can be prepared. Is this when forgetting who I am comes?

Grandma1954 Oct 2022
Dementia effects different people differently.
Diagnosed with one type of dementia there can be other types as well. My Husband's "official" diagnosis was Alzheimer's but I think he also had Vascular dementia as well.
I also stopped looking at the "stages" because my Husband was able to do things when he shouldn't have and was not able to do things he should. He became non verbal when he should have been able to talk, he was feeding himself when he shouldn't have been able to, He was walking one day and literally over night he was unable to walk, he fed himself at the beginning of the week and before the end of the week I was feeding him.
Just prepare yourself for anything.
Expect nothing.
Encourage what he can do.
Rejoice when he can still do something
Mourn what he has lost the ability to do.

lealonnie1 Oct 2022
My mother lived with dementia (thought to be vascular) until she died with it being quite advanced, and never forgot who I was. Your DH will not necessarily forget who you are, that's not guaranteed.

I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia.

The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”

https://www.amazon.com/Isnt-Common-Sense-Interacting-Dementia/dp/1481995995/ref=sr_1_4?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468655&sprefix=jennifer+ghent%2Caps%2C631&sr=8-4

Here is a list of useful tips from her e-book I found to be excellent:

The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience

The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment

Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently

Care Needs
· Recognize that receiving personal care feels intrusive
· Reassure with your tone and manner
· Do one thing at a time
· Talk through the care “play-by- play”
· Be aware of your body language and use it to communicate relaxation and reassurance
· Be sincere
· Use a soft, soothing touch
· Be aware of the individual’s unique triggers
· Be aware that a person with dementia may not accurately judge whether a situation is threatening to them
· They may respond to fear, pain or anxiety by defending themselves with what we call “aggression”
· If they become distressed, stop immediately and allow them time to calm down – don’t try to restart the activity right away
You need to change your behaviour to adapt to the dementia because the person with the disease cannot.
 
Wishing you the best of luck with a difficult journey.

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Caregiverstress Oct 2022
There are no rules to this thing and I find the “stages and what to expect with progression and when” charts and articles to be pretty useless. It’s day by day. Actually, it’s really hour by hour. The day may come where he looks at you and knows he loves you can’t remember who you are, and it may never come. I have wrestled my father’s finances away from him without him even knowing I’ve done it. Most days he doesn’t question anything regarding bills because I have put the majority of them on auto pay without even telling him. But then a day will happen where he is hyper fixated on money and gets suspicious. Then it passes. It’s ebb and flow. Going with the ebb and flow is the most stressful part of this beast as a caretaker.

rlynn123 Oct 2022
I've been in your shoes, like so many others. Like other people have mentioned, my mom, when she had Alzheimer's, always knew whom I was, except for 1 day. Actually, she was nicer to me when she thought I was a stranger. This often happens with Alzheimer's, from what I'm told. My mom too, would forget things from moment to moment. At first, I'd get aggravated by this, but then, I knew she had no control over her disease. I also learned, over time, not to correct her, so if she was convinced that it was Friday, but it was really Saturday, I went along with this, (at her doc's suggestion). Her memory issues seemed to bother me more than her, but I learned over time to just run with it, (even though at times I wanted to run away, not from my mom really, but from her disease). Sometimes it was hard to separate the 2. Good luck.

Fawnby Oct 2022
Every case presents in a different way, but it’s most likely he’ll start forgetting other people before he forgets who you are. I’ve had it described to me by a dementia loved one that there used to be a lot more people in his head and he knows that but can’t remember their names or faces, just that they used to be there. It’s sad.

MicheleDL Oct 2022
Has your DH been diagnosed? If I understand correctly, you already have health proxies in place. Good start. Maybe you have all the basis' covered already so forgive my rant.

My husband was 62 yrs old when the stuff started to hit the fan, exactly like his mom.

He's 77 now, and while we were having lunch at our kitchen table last week he casually asked me, "Where exactly do you come from". I told him. He was amused and said, Oh, and nodded twice . I bet by the second nod he had forgotten his question and my answer. He usually talks gibberish so this was nice.

Out of curiosity, I just paused typing to ask him my name, what is our relationship, and where was I from. He answered my name correctly, said that we were friends, and replied with the name of his hometown instead of mine.

We're married 28 years. About 5 years before we married he was married to someone else for about 20 years. Upon hearing his diagnosis of Alzheimer's disease, after about 2 years of tests and bits of whacky behavior, my first thought was - Will he call me by his first wife's name eventually?

Btw, I just paused again, while writing this reply to you to ask him if he was ever married. In a confident voice he told me no never. But I digress, (I always wanted to say that).

Anyway, that initial concern about remembering me immediately disappeared and became the least of my concerns.

One of the many weights on my mind was what do I need to do to shore up, will I be able to financially sustain this battle, and will I be able to endure the wear and tear mentally, physically and spiritually. What I didn't do well was to think that I am superwoman and that I could do this on my own.

You will have to form a community, a large one because people will fall away like flies. You may hardly notice them receding into the background of your life either by their doing or because you will be too busy to nurture your friendships, or some will just plain run for the hills while saying to you, I think you're so admirable for doing what you do. It's normal. Folks are uncomfortable.

If this is not your way right now think about doing people favors, while you can and Call-in those coupons later. This may not prove helpful their are strickly takers out there. Think in terms of creating a family of friends.

My group consists of a mix of caregivers of imobile and mobile loved one. We help each other. I may help someone manage a husband in and out of a car. They may be companions to my husband for a couple of hours while I'm at a doctor's office as he can no longer be trusted not to wander.

It hurts that I'm the only keeper of memories, and that he forgot who I am but in the natural progression of things this hurt and concern was knocked out of the park and is not in the least bit important.

He knows that I'm not his mom but I am his anchor. I must make sure he continues to feel sure of me, whoever I am and that I am his oasis, his rock. I don't care who he thinks I am.

It is important that you have a conversation with your husband now about many things that includes end of life wishes.

It is very important that you get informed about all the legal and financial documents that you will need to proctect him should something happens to you.

For example: Power of Attorney (POA), Medical Power of Attorney, Declaration and Directive as to Life Sustaining Procedures, and Last Will and Testament, and perhaps a Trust if you'd like. I may be using the wrong names for these documents. Also, know where your deed and titles are.

Join a support group of caregivers. A good one will not only provide you with the solace of others on this same path but a good one will provide information about resources, lectures, websites, books.

The caregiver community I meet up with twice monthly offers Zoom mtgs for folks on different levels of caregiving. Find your community. Get your ship in order.

A kind of storm is coming but you're going to find within yourself someone amazing.
CaroB123 Oct 2022
Thank you for what you wrote. It all makes sense and helps me to understand the transition I'm facing. My husband turns 90 in May and is forgetting soooooo many things and occasionally getting lost in our very small house. He is hearing impaired and legally blind and is an amputee that has never learned to walk without a walker or wheelchair. I like what you said about being his rock no matter what. That's the way I feel. And, you're so right about people that give you a pat on the back, but do not ever offer to take their Dad, friend, acquaintance...to the mall or Walmart or anywhere so you can get things done. My husband still loves to go to the minor league ballpark. He sits in his wheelchair, drinks a beer and eats a hotdog and soaks in the spirit of being there. It would be nice if, just now and then, one of his family or friends would offer to take him.
Ah well, if wishes were horses, beggers would ride.
ConnieCaretaker Oct 2022
Remember, the roller coaster ride starts off slowly, so that you're unprepared for the nightmarish (or thrilling if that's your viewpoint) ride.

One of the early events that we experienced is my husband forgetting how to use a stick shift while stopped uphill at an intersection. OMG! He has a big Ford truck which is automatic, but the "good old boys" can switch it to manual. His forgetfulness in other scenarios didn't scare me, but this incident is imbedded in my brain and I am reminded of it, every time I get I get in his truck. An anxious "back seat" driver is not a pretty image, but I am correcting him at every turn. This only happened once and he barely touched the driver's van behind us: it could have been so much worse. We have discussed it many times and he knows his days are numbered.

We went to see a Neurologist to obtain a definitive diagnosis. Then we started planning (seriously planning) our end-of-life plans with an Elder Law Attorney and got our wills and other important documents finalized with an Estate Attorney. I got very involved in his issues and then it occurred to me...........what if I died first? We have to have plans for both of us, individually. I finally found my way to this forum and it has opened my eyes about brain disease and the devastation it causes patients and their families: there is a lot to learn and my next goal is to seek out the lady, "Teepa Snow" who is recommended highly for her wisdom and techniques.

So, while you're preparing yourself for what lies ahead in your DH's life, don't forget to make plans for yourself including keeping friendships and planning vacations. Don't forget that you matter too and if there's no one to pamper you, give yourself the gift of good mental and physical health: ask for help.
MariaIL Oct 2022
Thank you 1000 times for taking so much time to offer advice and support. Daily I operate on a Things could (will) be worse and try to be grateful that he is positive and cooperative as things go. We are married 50 years and I am hoping to keep him home as long as possible. I also have/am working with an ElderCare lawyer and have those financial ducks in a pretty good row. I have recently subscribed to a program that will come in an emergency if something happens to me, since I am the only one caring since we are old - he is 88 I am 83…..so good to hear other’s stories. They really help. Thank you again.
RozDarlin Oct 2022
Take him to a neurologist who will test/measure his cognitive decline. My mom is at this same stage of early dementia. They do have meds that slow the decline.
Fawnby Oct 2022
Depends on the source of dementia. Some dementias don’t respond to the meds you have in mind.
MicheleDL Oct 2022
Re: the ball park. Could you call a couple of his friends, or family, and say tickets to the game, and maybe beers are on you if they wouldn't mind taking your husband.

I asked a terrific guy with whom my husband and I use to play Pickle ball if he would simply sit in my livingroom for about 3 hours with my husband while a friend took me to have rotator cuff surgery. He said yes, in the first phone call. Then he called back to ask what should he do if my husband had a melt down, which he doesn't. In the third call back the friend asked if I could give him an emergency number should he need it. Needless to say, I said my neighbor just passed by and said she absolutely won't take no for an answer and wanted to sit with my husband. I apologize for troubling him but I was so very grateful that he said yes. Boy did my nose grow. I was back to square one. Only a dear handicapped friend with an autistic son came to my rescue. So back to what I was alluding to in my first reply…the friends you make in your new culture will to the bone not be afraid of helping to include dealing with messy stuff. They will understand and whole heartedly sympathize with you and your difficulties like no other.

Llamalover47 Oct 2022
MariaIL: There is a wealth of information on the internet about cognitive impairment such as the book, "The 36 Hour Day." Wishing you strength for the difficult journey ahead of you and your DH.

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