oldageisnotfun2 Asked August 1, 2024
How did you cope with (and manage) the slow onset of dementia of a loved one?
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When you realize it might happen or is happening, start seeing some signs, how do you cope with it? You know it's the same person from the outside, but now they respond differently and act differently. How do you cope with all the different things that were not there before? How do you keep your sanity when knowing you're not going to get the same logical and rational replies you'd expect? How do you stop getting irritated and fustrated yourself? How do you come to terms with it? How do you adapt to it? Makes me want to cry seeing someone change from what I knew them as and not even that long ago, I just want the person I knew back.
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You must remember that with someone with dementia that "logic doesn't live there anymore" so not much if anything will be logical or rational.
But do know that even as the dementia progresses the person that you love is still in there somewhere, and occasionally you will see glimpses of them. So treasure those moments and know that you are not alone.
There are a lot of us out here that have been there done that, and are still alive and here to tell you that this too shall pass, and that you're going to be ok, and will come out a better, stronger person when it is all said and done.
God bless you.
My mom's been slowly progressing with vascular dementia, and she was never very nice in the first place. So I can only imagine how hard this is.
All I can say is just remember your moms brain is broke.
Most of us here are loosing bits and pieces of are loved ones gradually and it's a process of gradually mourning the losses.
4 years of taking my mom every place I went, every store I went to. Now it's getting down to me saying, "well that's the last time we will be going to the plant nursery" or that's going to be the last time she sees the inside of a Kohl's.
We have babies and we watch them take there first steps, now because of a degenerative back , I'm slowly watching my mom take her last steps.
It takes time to accept it, and instead of celebrating we mourn. I'd say that is the key for me is accept the aging process and mourn the losses as they come.
😁😥
I guess no one is prepared for any of it and some how after slowly going through stress, worry, and frustration, plus more, people have to start adapting to the situation and learning as they go. Easier said than done.
I can relate to your frustration of going places 100%, sometimes you don't know whether to stay silent or ask a question, because the slightest thing can spark an argument, and it's as quick as spark, because even the most innocent of questions can be the spark and from the caregivers side it ends up being a lose lose situation, because trying to rationalize (explain) just makes it worse.
Most of of us as healthy adults are wired to rationalize and give a response to the person we're communicating with. Of course there could be other factors involved like the person with all the other serious health issues and they're just angry at their health situation, get really frustrated and asking the innocent question is just that anger coming out, but when the person that is being cared for has serious health issues and early form of dementia, that's really hard.
I admire you staying by your mom's side with all the challenges you have, I'm sure most people on this forum can relate that it's not easy as caregivers and it's good to have other people understand this.
Once recognized it is a matter of medical intervention and diagnosis, and then best means of protection. You will have to come to terms with what you can provide and what you cannot, what constitutes safety in environment, what legal steps to take for protection (get that POA NOW WHILE YOU STILL CAN). and etc.
There isn't a roadmap. There are a few Forums such as this one with those who can help you work on what's on the menu for TODAY, but there's no long term plan and that's what makes all of this the anxiety-provoking nightmare it IS.
I wish I could provide comfort. But this, with you and your loved one, is a whole different journey. I can only wish you the best and provide you with knowing you aren't alone, there aren't always good answers, and your own position and journey is unique as your own fingerprints.
Other days, I wouldn't call it "coping", I'd call it hanging on by a thread. I just sit with the stress and misery and continue breathing in spite of feeling like I could fly into a million pieces. I survive the more stressful moments simply by not dropping dead.
Most of all, tell yourself that this WILL end and things DO change. Parts of life are hard and that's okay.
I am sorry you are going through this. I wouldn't wish it on anyone.
Because Mum never did go back to being quite the same person afterwards, I think it helped me to accept the changes brought by dementia. And it had been upsetting, but eventually tolerable to accept that Mum would never be the same again, after the cerebral hemorrhage, because she was alive after very nearly dying.
One thing that used to make some days brighter was when we saw flashes of the person my mum had been, even after the vascular dementia had set in. Mum's dry, almost caustic, humour would come through when we least expected - the timing so perfect, the humour so sharp and clever, that we would be convulsed in laughter.
Those days are past and my mum is now a shrunken figure, lying on a hospital bed in her own bedroom, on end of life drugs and palliative care. I now treasure those memories, despite the dementia.
My DH aunt is in much the same shape as your mom. My daughter came home for a quick visit last week. She hadn’t seen DD in several years though they have spoken on the phone until aunt lost that ability as well. They were always very close. When DD went to her bedside. Aunt lit up like a Christmas tree to see DD, then asked who I was. 🤔🤗
I said “oh, I’m just the wash woman”. I was putting away her laundry. She smiled and nodded. We treasure those rare glimpses when they do appear. I doubt she “knew” my daughter, but she recognized something that made her very happy.
My husband passed away 3 days ago from Alzheimer’s. It was a 5 yr battle for both of us. I would get so mad, and frustrated with him. I believe it was my lack of acceptance of the disease. You just want to “anger it away”. If you are mad enough, yell enough, teach enough, show enough, read enough books, go to enough Drs, the person will go back to normal. Again, that will not happen. Theres not “enough” of anything to help.
I got some help joining online caregiver support groups. Even if you aren’t the main giver, it will help immensely. The book 36 Hour Day is very informative. There are lots of sites with coping mechanisms, like Alz.org, dementia.com. The Area Agency on Aging in your location is also a great source of help. YouTube, Instagram, Facebook all have tons of info on dementia, what to expect, how to handle etc.
Because this is a terminal disease, try to remember even during the rough times (and there will be many), that you love this person, they didn’t ask for this disease, so they are helpless, and anything bad that comes out of their mouth is the disease talking, not the person. Dementia can make some people really have different personalities than what the person would have normally been. The person can be very emotional and lash out. Try to understand, early on, they know they are losing themselves…how scary!
Brace yourself, don’t take thing personally, learn to go with the flow, NEVER argue with the person, and don’t try to “teach/re-teach” them anything, itll just be too frustrating for your both. Practice patience. Easier said than done I know, but that’s how you cope and adapt.
Most importantly, take care of yourself first. You can’t give the person care or love if you are frazzled, hysterical and burnt out. Seek out caregiver support groups in person or online. I went to 3 different groups. Get individual counseling for yourself. Speak to your Dr about antidepressants for yourself. Get support from friends, family, church…anywhere you can find it. You need support to help the person and you get through this process. The ending will be hard. Don’t make what’s left of their life any harder by not getting good help. Remember it’s the beginning in of the end for them. Be loving, patient and supportive for them. All the others you find (groups, friends, family etc) will be supportive of you. You will learn coping mechanisms that work for you by educating yourself on the disease.
My journey has now morphed into a different journey. Wish I could’ve learned earlier how to be patient. But you are only human and will do the best you can.
I would begin by searching out a dementia support group. You don't say where you're from, but calling the Alz Assn hotline should be able to hook you up with support groups in your area. That number is 800.272.3900. A support group can allow you to express your emotions without feeling guilty, the group can validate your feelings, you can learn from others in the group how they're coping, and maybe most important of all, you'll see that you're not alone in this endeavor. A support group can be very cathartic, and it's all done in a nonjudgemental and confidential manner.
There are excellent books, websites and YouTube videos to help. Teepa Snow YouTube videos are great for dealing with behavioral issues and understanding dementia diseases. The book "The 36 Hour Day" is probably the bible for caregivers. But there are others: "Learning to Speak Alzheimer's" and "Surviving Alzheimer's" are also excellent books. If you have a church, your pastor or rabbi may offer some comfort.
So, oldageisnotfun, become informed about how to cope with dementia symptoms and its diseases. This is going to be a long journey, one in which you can't navigate by yourself.
How I handled it (companion and I work with elders in various stages of dementia)
* I took TEEPA SNOW's on-line webinars for 1-1/2 to 2 years learning about dementia - how the brain changes, what parts of the brain manage what). This help(ed)(s) me to be more compassionate.
* It helped me realize that the person I knew is no longer 'inside' their body.
* It is 'grieving in slow motion. It is cruel.
What did / do I do:
* I meet a person where they are. You have to. Observe. Listen.
* I observe and respond in ways which will keep the person as calm as possible.
i.e., if they say things that do not make sense which is often the case as they are confused / disoriented, I may say 'oh' ... 'okay' ... "I see." I may say "that's a good idea, I'll think about it and get back to you."
then ...
ALWAYS REMEMBER: Change the subject.
* YOU NEVER EVER CORRECT THEM as this is counter-productive, may create discord / emotional turmoil / angry reaction... realize their brain (has/) is changing, they cannot 'think' other than how they think and get the words out (if they are able to speak).
* You allow yourself to grieve, understanding who / what you have lost and how the person has changed. "Deep down" inside, they still know ... it is 'just' different.
IT IS IMPORTANT TO:
* be aware of non-verbal behaviors (yours)
- tone of voice (calm/ing)
- facial expressions (smile)
- touch (hold their hand, a hug -- whatever feels appropriate
* You get books (Teepa and/or others) and read (or/and watch You Tubes) about dementia as, to me, understanding and educating yourself is the first step to dealing with your own grief/sadness and an array of other feelings and learning how to communicate with your loved one.
- You learn that dementia is 'a new language' that often loved ones are 'thrown' into and have no idea how to handle. We are not taught 'ahead of time' how to manage all this.
* Be extra patient and kind with yourself (and your loved one).
- Go out to the park, museum, walk, whatever you need to honor yourself / your feelings now. Take care of yourself: eat healthy, exercise, get enough sleep.
* Take breaks as you need to.
* Learn to expect the unexpected. As you anticipate, it will help you cope better. Never have expectations of how they 'should be' - they are as they are.
* When you feel frustrated, leave your loved one - step outside for a few minutes and cry or regroup as you need to,
* Lean on church, friends, networks (Alz Association for instance); get into therapy.
Yes. You want your loved one back as they were. This is the grief of losing someone when they are 'still here.' It is a very cruel disease.
Here's a hug for you,
Gena / Touch Matters
I did tell her… several times… how do I answer without constantly saying “yes I did tell you, you forgot “.
I saw this one man, wonderful sweet man, was a principal, we would be out for a walk, a stranger would say hi , he would just smile and keep walking, one time we where in front of his house and his daughter came up to him, his eyes lite up and he says, " do I know you" , his daughter says, " yup, I'm your daughter" his reply was, "oh, isn't that nice".
The greetings his daughter got compared to strangers was night and day.
So remember " The heart never forgets" 💗
The only way that works for me dealing with my Alzheimer’s wife.
Forgive. Forgive them, and forgive yourself when you get upset and frustrated.
Love. Love them for what they mean to you, for all the years shared, and for the glimpses of joy that you can tease out of each day. Love yourself for being a person who is willing to do this hardest of all work.
Accept. Accept your own weakness, your own needs, your own depression and despair. Accept that you have lost even more than they have, because they do not know or understand the loss.
Believe. Believe that there are many others who are going through the same thing. Believe in your own ability to cope, because most of the time you will. Believe in anything that supports your faith and gives you strength.
Hope. Hope that each day won't be so bad that you cannot bear it. Hope that there is no suffering as the end approaches. Hope that you will find joy in life without your loved one, because whether they die or simply fade away, you will lose them sooner or later.
Remember. There was a life shared with laughter, joy, love, pain, growth, and many other things that make life worth the effort. Share those memories through stories and pictures.
Rest. Breathe. And try again tomorrow.
You deserve compassion and your feelings are not wrong - you have been through and are going through a difficult time with your mum. However, they are not serving you and they are making you feel bad about yourself.
If possible, step away. If visiting your mum isn't bringing anything good to either you or your mum, then either stop or reduce drastically.
You don't have to put yourself through this.
Perhaps, you could just be an advocate to ensure your mum's well looked after, but not be hands on.
Wishing you all the best.
Also, many many people said Mom with dementia would get extreme anger and meanness and put feces on the walls. THIS NEVER HAPPENED IN 18 YEARS OF THE DISEASE. Mom remained sweet. Ignore a lot of stuff that people say.
Also allow the person to function at their highest levels.
Mom was good at:
folding laundry
putting silverware away in slots in silverware drawer
dry swiffering (dry mop) the floors
peeling potatoes
picking up pine cones outside
taking outside walks
She did all of the above for many, many, many years