How did you cope with (and manage) the slow onset of dementia of a loved one?

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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.

Alzheimer's & Dementia Caregiver Support Grief Mental Health

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My mom has been telling me for years that she remembers what she considers to be important. I have been seeing signs that something was wrong for decades. She has always been controlling and tried to get her way, so now with her dementia her disagreements don't even make sense. She lies and makes things up because she can't remember. What I look for is the smallest thing that reminds me of my mom's good qualities. When I made my extended family dinner and cleaned up the kitchen, she said " I bet you are tired." In the morning, saying "good morning" and "have you made coffee?" Just any little thing, that was what she always says. I have stopped trying to make her better when it actually may make her worse, because she is struggling to stay in charge of herself and do whatever she wants or not do. I never thought we could live together but almost through the second month. It's easier than long distance. I now have very low expectations. I still see how kind she is to strangers and loving to my young grandchildren. She still has pride in how she looks when we go somewhere. She thanks other people even when she gets a flu shot. Try to find the small things and be grateful.

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Reply to CareforMominTN

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My mom has been telling me for years that she remembers what she considers to be important. I have been seeing signs that something was wrong for decades. She has always been controlling and tried to get her way, so now with her dementia her disagreements don't even make sense. She lies and makes things up because she can't remember. What I look for is the smallest thing that reminds me of my mom's good qualities. When I made my extended family dinner and cleaned up the kitchen, she said " I bet you are tired." In the morning, saying "good morning" and "have you made coffee?" Just any little thing, that was what she always says. I have stopped trying to make her better when it actually may make her worse, because she is struggling to stay in charge of herself and do whatever she wants or not do. I never thought we could live together but almost through the second month. It's easier than long distance. I now have very low expectations. I still see how kind she is to strangers and loving to my young grandchildren. She still has pride in how she looks when we go somewhere. She thanks other people even when she gets a flu shot. Try to find the small things and be grateful.

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Reply to CareforMominTN

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Brandy again--

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

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Reply to brandee

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One day at a time. Live in the moment.

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.

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Reply to brandee

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I’m failing in each & every one of your questions. Failing with a Capital F. By design, I’ve never been a patient person so this has all but taking me under. I’m so angry. Angry at this other worldly disease, angry that my mom has lost just about everything yet still remembers her & I have never gotten along. I’m losing my compassion towards her and it shows, so I then carry guilt for not having compassion. It’s a vicious circle I’ve been on about 2yrs now. My mom is gone and who she became is such a verbally aggressive person that I don’t want to visit her anymore. I’m having a really hard time..

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Reply to MSalazar227

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Think about what words of advice or compassion you would give if I or anyone else had written your comment. Then apply them to yourself.
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.

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A day at a time. Use adult day care for your loved one . Attend a support group. If you belong to a church, synagogue, mosque, or temple, consult with a clergyman or clergywoman. Ask your primary care provider, your loved one's neurologist, or a clergyman/woman for the name(s) of good therapists if the other suggestions don't help. Spend time w/friends and friends and family. And remember, "You did not cause this. You cannot change it. You cannot cure it."

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Reply to swmckeown76

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Pick a few close friends who you can trust and confide in. You need someone who will let you cry, so that you can smile and support your loved one as you try to make the best of each day.

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.

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Reply to DrBenshir

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I too am going through this, going on 3 years. I have sought the help of therapists; not that helpful. Your advice is exactly what I needed to hear, I’m very alone in this . I need to find a support group for dementia. I used to think Parkinson’s was the worst that could happen. Dementia is worse. My husband has Parkinson’s as well as Parkinson’s dementia.

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Never argue, redirect, smile and give very simple answers.
The only way that works for me dealing with my Alzheimer’s wife.

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Reply to Hector45

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I finally came to terms with my husband's dementia by telling myself he really can't help it when things don't go as I expect and wish they would. I still get frustrated and even yell a bit but nothing like before when I just wouldn't believe he did not understand something. When I quit expecting things to be a certain way, it helped bring our stress levels down quite a bit. I still fall back in to expecting from time to time though.

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Reply to KPWCSC

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oldageisnotfun2: Continue to show love. The person is still your beloved loved one.

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Reply to Llamalover47

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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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Reply to Calliesma

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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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Reply to Anxietynacy

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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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Reply to TouchMatters

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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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Boy, if we only knew the answers to your questions as we went thru the caregiver's experience. Being a caregiver for a LO with dementia is all OJT (on the job training). Many of us on this forum have asked the same questions, as we experienced the decline of our parent or spouse. Each and every one of us goes thru a different experience.

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.

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Reply to sjplegacy

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I wasn’t educated at the many phases that dementia patients could go through so my experience was eye-opening. I thought dementia patients were only forgetful and confused. Had no idea of the aggressive behavior, repetitive nature, or severe personality changes. Eventually, when I began to understand that it is the nature of this awful disease NOT our LO, I finally accepted the changes presented each new day. I don’t love it but must accept it and deal with it. I miss my real mom—the lady who cooked and joked, but I accept that she’s no longer the same.

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Reply to LoveLea

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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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Reply to Donttestme

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So sorry for your recent loss Donttestme. Wishing you rest from your long journey and much peace.

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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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Reply to sparkielyle

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Mum developed vascular dementia, which I've read is common when a person has had a major stroke.

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.

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Reply to MiaMoor

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Mia,
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.

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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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Reply to Jamesj

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You Manage it with a Lot of love and compassion for yourself and them . Get a support group - Alzheimers association Has the course Savvy Caregiver - great Hand Book too for free and they have Teepa Snow in Person . You Can always call someone there - They Have Volunteers . Some senior services Have support groups I was in One with Boston senior homecare - Good to check In and have a Counselor , they also Offered a Life coach for a few sessions . I Have Had 2 therapists the Past 8 Years . Also I would go to My community acupuncture clinic for support and treatments for stress.. Joan Halifax at Upaya Zencenter Has a Course coming up called G.R.A.C.E . it is for caregivers - she is charging Now But Its a good course I have taken it 3 times . She Has On Going Courses for topics such as Death and Dying By Donation or free . A Lot of people On this forum are very Helpful so you Have come to the right Place . A Lot of wisdom and Knowledge is here On this forum . Best to accept what is Happening and go with the flow - there will be good and Bad days - Just enjoy your Loved One !

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Reply to KNance72

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Last year, I noticed changes in my mom's behavior. Her writing changed all the sudden. She became more disorganized. My mom was struggling with preparing her medications for the week. Her bills were piling up. My mom was very smart. I knew it was over when she was hospitalized from a fall. I knew my mom couldn't go back home to live alone. I have been in survival mode from dealing with my dad's decline in health and passing away at the same time. I am the only child. It's been a crazy journey. I have cried out In despair. I am dealing with my mom's dementia getting worse. I an seeing all sides of this ugly disease. My mom was a capable lady. Now she needs taken care of like a baby. I am 50. If I was a young lady, I might have lost my mind with my mom. You have to take one day at a time. I still see my mom in there, but she is fading away....

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Reply to Onlychild2024

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I’m sorry you’re going through this. I am also an only child with a mother who is memory care now. Her dementia became intense with paranoia and delusions. My dad is living independently at home. The most important thing is to take care of yourself mentally and physically. Last year I had 2 surgeries and was diagnosed with hypertension and kidney disease. I’m sure the stress and everything else contributed to my decline. I am now consciously taking the time for myself and my family. I even schedule it in my day like an appointment to just stop and breathe.

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get educated and get a support group. I regularly listen to Teepa Snow. She is an expert on dementia and caregiving people with dementia . Look her up online. Good luck! You’ll be in my prayers!

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Reply to mobrien0214

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My pastor told me that this struggle is, "the hard work of love." Remembering this helps me to cope with declining husband. May God bless your journey.

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Reply to Swanny

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My husband reminds me a lot through my tears and feeling of failure - sometimes love looks like just showing up.

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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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Reply to BlueHeron

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I don't think this WILL end.

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Basically you cope with it knowing, as you said, what you know and what you see, and negotiating what is best to do. Each individual is just that--an individual with a whole unique life and different set of circumstances. In my own case my brother lived at the other end of the great state of California and I missed first clues, only seeing the deterioration and a period in which he lives a bit more out of reach with a partner.

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.

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Reply to AlvaDeer

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Accept what is. Realize that you can do nothing to change it. That leads to more enjoyment of the moment, and that in itself can be rewarding.

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Reply to Fawnby

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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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Reply to Anxietynacy

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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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Reply to funkygrandma59

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That's lovely funky... really touching too, thank you. I needed to hear this, so really thank you. :)

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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.

How did you cope with (and manage) the slow onset of dementia of a loved one?

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