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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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Some days I cope as if I'm using tools in a tool kit. Deep breathing. Reading and posting on forums like this one. Talking to friends and co-workers about my feelings. Mentally planning a future vacation, or planning just a few hours of something I will enjoy. Reminding myself that this is not my fault and it is not her fault. Telling myself that the dying process is often long and slow and messy. It doesn't have to be done "the right way". I don't have to handle any of it perfectly. I don't have to answer every question. I don't have to correct her. I can zone out if I need to.

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.
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aubaby1970 Aug 8, 2024
I don't think this WILL end.
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One thing that has helped me is not to dwell on the past or even what has happened yesterday. If someone asks how Lynnette is doing,, I answer with today has been good or not so good. It sounds so simple to do but it takes practice. If you can only accept what is today, with work you can live more in each moment. It has only taken 4 1/2 years to reach this point for me. Strive for it, it will lead to more peace with the day to day trials. Try to start the day with no expectations, expectations can lead to disappointment and that can lead to doubting yourself. Not saying this is easy but you can do it. You are stronger than you think.
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Anxietynacy Aug 2, 2024
Good advice
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Of course you want your loved one back. That’s natural. Sadly, with dementia it won’t happen. You will see glimmers of the person from time to time, but that’s all. And those glimmers will be less and less over time.

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.
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97yroldmom Aug 8, 2024
So sorry for your recent loss Donttestme. Wishing you rest from your long journey and much peace.
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In retrospect (and we're still in it), we made a lot of mistakes in the beginning, trying desperately to pull our dear mother out of her crumbling consciousness. We'd make signs and pictures and write directions and remind remind remind- we'd say, "Yes, you read that to us just a few minutes ago" etc. We even made the mistake of trying to explain her dementia to her. I would advise against that. The action we took that gave us all the most joy and peace was entering into her reality to the best of our ability, learning to redirect, which, in her case, is almost impossible, and empathized with her fears and angers, her inability to understand, we took as our own as far as possible and we tried not to let her know when we worked behind her back to clean, prepare, fix, etc. As the disease progresses, it becomes a bit easier to manage things behind their backs and lying becomes our very best agent of getting through a day. We do whatever we can to preserve her sense of dignity and control. We set up situations where we need her help, we have a load of laundry to fold daily- we do the things behind her back that she would agonize about forgetting (feeding the birds, setting up breakfast or the table)... try as much humor as possible, look into their face and speak slowly and clearly. Smile whenever you can and touch your LO with hugs and kisses and be with them in their reality. May you find strength and humor out this so brutal journey.
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It is sad and that is an understatement.

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
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Dawnscott Aug 19, 2024
How do I handle this situation… every day I will talk to my mom about something going on with my children and grandchildren. Every day she will say “ you never told me that! Nobody ever tells me anything!”
I did tell her… several times… how do I answer without constantly saying “yes I did tell you, you forgot “.
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Oldageisnofun, I'm sorry, I really have no answers for you but I just want to let you know that Im sorry.

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.

😁😥
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oldageisnotfun2 Aug 2, 2024
Anxietynacy, Thank you for the heartwarming and thoughtful reply.

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.
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It's never easy when you're losing someone you love slowly, daily right in front of your face, but it does get a bit easier in time when you educate yourself more about the horrible disease of dementia, seek out support groups(preferably in person in your city)to be able to share with others going through similar things, and when you make yourself a priority as well, and continue to do things that you enjoy.
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.
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oldageisnotfun2 Aug 2, 2024
That's lovely funky... really touching too, thank you. I needed to hear this, so really thank you. :)
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For the first several years it was soooo difficult. My coping skills, anxiety and sadness of it all had to mature as her dementia increased. It didn't happen overnight. For the longest time I could not get away from trying to argue and debate and prove her wrong when she would say crazy things. After time you adjust to the fact that this is not the same person and I cannot reason with them. Their brain is broken and I will never get her to see reality. Once you "get there" that is when empathy comes into play. You feel sorry for them and just want to meet their basic needs and be there for them as much as possible. There is a sadness that consumed me when I reached the empathy stage because I had to accept the fact that my mom as I knew her was gone. I am envious of those who only had to deal with dementia for 3 to 5 years. I think we are on year 15... My mom is relatively healthy physically so I don't know how much longer this will go on, but I am tired. I know she wouldn't want to exist like this so I pray God will take her and put us both out of our misery.

I am sorry you are going through this. I wouldn't wish it on anyone.
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The compassionate people here have covered answers very well. I’d add that be aware when you unconsciously revert back to ‘fix it’ mode. I’ve accepted the journey, know God is at work even if we can’t see it, and He is the fixer on His timetable. But when my anxiety begins to increase it is usually because I have fallen into control and fixing it for my Mom which of course I cannot do. Hugs and love and know you and your loved one are not alone in suffering. This forum helps. I pray for you all daily
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Oldageisnofun, one other thing I wanted to say, years ago I took care of mid stages Alzheimer's, after observing them and there family, the main thing I saw was, "The heart, never forgets"

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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