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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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.
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.
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 “.
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.
I am sorry you are going through this. I wouldn't wish it on anyone.
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" 💗
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