Slow loss of mom with dementia - YouLookFab Forum

Category

Off Topic

Welcome! Read about what to wear and how to wear it on the YLF Blog. Join the YLF Forum to ask specific questions or just chat about fashion and personal style. Or check out the curated list of things we love in YLF Finds.

Outfits Ensembles Trends Advice

Slow loss of mom with dementia

viva

Veteran

I've been very close to my mother pretty much all my life and have lived very close by her most of my adult life as well. When she started showing signs of dementia about three years ago, she was only 10 minutes away and I had a lot of time with her -- both helping and enjoying her company during her very slow decline.
Now she lives across the country with a sister (one I am not close to) and our contact is through occasional phone calls and letters, both of which are very hard as her dementia has increased. She can only carry a very short phone conversation, and her handwritten notes look less and less like her, and are now typically two completely repeating paragraphs. For the first time today, I cried not because I miss her -- which I do -- but because I miss the OLD her. It was very hard.
I will be visiting her in the spring, which will help somewhat, but I am struggling with this weird mourning I am feeling now.
Just wanted to put that out there in case anyone can relate or share their experience that I can learn from. (It's been a hard holiday season -- another sister who is my best friend, and whom I would typically reach out to in such a situation, attempted suicide right before Christmas. Needless to say, I've been feeling a little bit unmoored.)
Sorry to unload but I writing this was helpful.

Off Topic

34 replies

Latest reply was from

suzyq

Wow you have quite the full plate right now. I lost my own mother to ALS very recently and I can warn you that you will have several to many more moments of intense mourning before she actually passes. My sisters and I actually felt relief when she did. My grandmother had dementia and lived to 99. My father is following in her footsteps. I'm sorry as I have no real words of advice. If it hasn't been mentioned before (when she's in the thick of it) don't remind her that someone she loved or a favorite pet has passed when she inquires. Just tell her they're out for a bit. Wishing the best for you and your sisters.

Caro in Oz

Veteran

So much happening for you - no wonder you are feeling unmoored. I have no sage advice I'm sorry to say. Just that I'm glad you reached out & we are here

Both my MIL & FIL had dementia that lasted far too long. My husband was very surprised to find himself mourning them while they were still alive. He said exactly what you have, that he missed the OLD them.

Thistle

Veteran

I am so sorry. So many things happening right now, and none of them feel good. I have no good advice, but just know that we are here for you.

Isabel

Veteran

I don't have any experience with it, but I just want to say how sorry I am. This must be so awful.

Adelfa

Veteran

You are really dealing with a lot. Very tragic things going on. So sorry! I hope your sister can get the help she needs to get better.

cheryle (Dianthus)

(website)

Veteran

My mom's father and two or three of her siblings have or had alzheimers and she has been showing symptoms for about 5 years. Not too many years ago, she would complete the NY Times weekend crossword puzzle with little difficulty. Then I would notice that the puzzle would be sitting on the table with few answers on occasion. Now she doesn't attempt it. She thinks things that happened a year or two ago were a few weeks or months ago. She rarely drives anywhere any longer because she can't remember how to get back home. I have also noticed that her personality has changed and she can be nasty and very defensive at times. It is sad to see the changes. Physically she is very healthy for 77 but mentally, she is declining very quickly.

It really is hard to watch. It is not only hard for her but for my father too. He has significant health concerns himself and I am sure he is worried about what will happen if he isn't here to take care of her.

I understand how you feel. One thing I have found and also heard from others is that those with dementia or alzheimers get very frustrated when they are told that they are repeating the same story or have forgotten things.

Angie

(website)

Fashion Stylist

I have no words of wisdom, but am glad you posted, Viva. Sharing our challenges relieves the stress - and you are always welcome to off load and seek support here. Hang in there and good luck. xo

Mary Beth (formerly LBD)

(website)

Veteran

Oh Viva, I am so sorry that you and your loved ones are going through this!

I wish I knew something comforting to say. We watched my grandfather's psyche slowly unravel with Alzheimer's. The difficulty of the disease is that there are moments when the mind seems crystal clear - and then there are moments when you realize you are deluding yourself into believing that the mind is crystal clear, because you wanted so badly for it to be so.

You do what you can. Be patient, be compassionate, be strong, be gentle. When you need to be, be firm. With your mother, with your family, with yourself. Above all... be patient with everyone, and with yourself. Sometimes that's the hardest part. And if you have to excuse yourself, go in the other room, and shed a few tears, do it.

My prayers and good vibes and well-wishes to you and your family.

carter

Veteran

I am so very sorry. My dad had Parkinson's and the dementia that comes with it. He was, and always will be, my hero. It was so incredibly difficult to watch his decline. My stepmom always told me not to let my dad see my heartbreak or to question that anything was not normal. Of course, she was right, but there were so many times I just wanted to scream. As hard as it is, just accept the joy that she is still around. Make her as happy and comfortable as you can, and take care of yourself so you have the strength to give her what she needs. I also hope that your sister is willing and able to get the help that she needs.

Suz

(website)

Veteran

Viva, huge hugs to you. I'm so sorry you are dealing with this, and sad for your mother and your whole family. I have no words of wisdom but I can certainly identify with the challenges of long-distance care of and for an elderly parent. My mother's challenges are different from your mother's but I feel a similar seeping sense of loss and frustration about not being able to do more. Sibling relationships also become more complicated at this time.

TraceyLiz65

(website)

Veteran

i have experience with this and can just say that I didn't cry until she had passed. I cherished every moment and my biother and I kept each other's spirits up laughing at some of her changes. Towards the end she would call me every morning between 10-11am and on some days we would have a short delightful conversation and others would be, her just saying, "I love you and tell the kids I love them." I told my husband that it was precious to me and that even that was enough and I would grow to miss those calls. Which I have!
No real advice other than to cherish any moments you have contact with her and of course mourning the old her is part of il. I was knee deep in dealing with the school saying my youngest had a learning disability and aching that it was the first struggle as a mother that I didn't get to share with her. Her only response, was that he was so intelligent... Tears are flowing as i type this because that memory of going through that without her runs deep.
I guess I just wanted to respond and let you know you are not alone and my heart goes out to you.

Janet

(website)

Veteran

I am so sorry. It must be so difficult. My mom was mostly healthy and quite mentally present right up until her final weeks (which were spent on life support). That was tough, but I can imagine this slow deterioration is even more heartbreaking. Big hugs to you.

Gigi

Veteran

Viva, I would not consider this a weird kind of mourning. My psychologist is fond of saying that grieving happens in a lot of situations, not just in physical death. For instance, people who are in bad car accidents and have brain injuries or severe disabilities can no longer be their "old" selves and have to work on creating "new" selves. All the talents and abilities that they used to build their personalities are no longer available to them. This is a kind of death to themselves and to those who know them well. So you are starting the process of mourning.

Prayers are coming your way.

Anonymous

I haven't any experience with this type of illness, so unfortunately I have now words of wisdom to offer. I just want to say how sorry I am that you are going through this and sending comforting vibes your way.

kkards

Veteran

so much to deal with, and all at one time. i wish i had some wonderful words of wisdom for you. please be kind to yourself.

viva

Veteran

Thanks for the kind words, everyone. I am fortunate that my mother is not angry or frustrated, although she does have occasional fearful moments. Mostly she is very happy and living in the moment. But yesterday I felt so deeply the loss of our relationship. Although she only finished formal schooling through age 16 (wartime Emgland schooling) she was self-taught: well-read, an accomplished artist, an amazing cook, a skilled gardener, and a giving volunteer. I miss our many, many conversations and shared activities. I had received three cards which I opened yesterday, and they all said the same thing ... and each one repeated itself as well. I love how hard she tries, and that she tries at all, and I am so grateful she is still living, but the decline and the loss are so difficult. Yesterday I just fell over the edge emotionally.
Thank you also for the words regarding my sister, who has had some extreme challenges in her life. She spent some time hospitalized over the holidays and is now living with another sister (we are a family of 7 girls, 6 living) and actively pursuing outpatient therapy. It's difficult but will ultimately mean a better life for her, I believe.
I appreciate so much all of your words. Thank you.

Irene

Veteran

I'm so sorry you are going through this, and having a sister that's not going through a good time herself makes things even more complicated and hard to manage.

My late grandma suffered from Alzheimer and even though she was not my mom, it's still hard watching someone go away while their bodies are still there. They become other, different people, and that would unsettle anyone. It's hard to understand, and to accept. I have heard of perfectly nice people becoming mean and aggressive after being diagnosed with Alzheimer or other kinds of dementia. Those who used to be maybe not so nice become real monsters, hurting those around them with the meanest of words.

You have to remember who they used to be, and hang onto that memory. Do not feel guilty if you are angry at them now and then, it's natural. You can be patient only for so long.

ironkurtin

Veteran

All my sympathies. This kind of loss is devastating. I am so sorry.

Anonymous

I'm so sorry, Viva. It is a very long goodbye. I remember crying because I missed my mom so much, even though she was still physically present.

In my experience the sibling roles can shift a lot while caring for a parent with dementia. There may be surprises there, so be open to them. And then the roles shift again when the parent dies. Oddly enough I am closer to all my siblings now, and my role in the family is very different.

There are hidden gifts, too. I frequently flew from Texas to Louisiana to help care for my mom, staying with my brother, and I became very close to my niece who was still in high school. We wouldn't have developed that closeness otherwise.

This book is a really good resource, and it's funny, too:

http://www.amazon.com/When-Rol.....8;qid=1388

If you ever need to vent, feel free to pm me.

tarzy

Veteran

Viva - I'm going through this myself with my father. I also live very far away. I was recently looking for some information and went back to emails from my dad from a little over two years ago - the difference in his personality was shocking to me. I'm so used to how he is now that I'd honestly forgotten what a character he was, how funny he could be, how philosophical. It's the only time I've cried in this whole experience (so far.) My brother and I split the responsibilities (I do all the on-line finance managing/researching/planning/big picture stuff) and I know the really challenging stuff is coming very soon, and some hard decisions will need to be made this year. I hope I'm ready for it. Please PM me if you ever want to talk, vent, or complain.

Nicole D

Veteran

They call it "the long goodbye" for a reason. I am sorry you are going through this. I am constantly amazed by families of people with dementia who find the ability to cherish the little things, as Tracyliz mentioned. That is a gift. On a practical note, now would be a good time to talk to your mom and sibs about advance care planing. It's interesting that some other members wrote about the dementia "going on too long", and talking about what your mom would want will make you feel better equipped to make decisions when the time comes. Contacting the Alzheimer Society will help a lot.

catgirl

Veteran

Sending sympathy. I worked as an elder law attorney for 20 years helping people with the legal aspects of Alzheimer's and dementia, and have dealt with it firsthand with my own sweet MIL now in late stages. It is the roughest road you can walk as an adult child, and the only real consolation I know is in support groups where others are going through the same.

Sveta

(website)

Veteran

I don't have any sage advice, just wanted to say how sorry I am for your mom. It must be heartbreaking situation for you. Hugs and strength to you!

viva

Veteran

Thank you again.
Alicat and Tarzy, thank you for sharing your experiences; it helped so much to read them -- I may be in touch in the future. And I will look at that book as well.
So grateful for this community,
Vivian

Anonymous

Vivian, I remember feeling like somebody was taking a gigantic eraser and erasing my mom. Even from month to month, if I went to Louisiana to see her and then went back in four weeks, there would be a little less of her there. She was always there, her essence, just fainter and fainter.

I hesitated to say this before, because it sounds harsh, but it is the truth as I know it, and it's what a doctor told my brother and me. Treasure her as she is now, because no matter how bad you think she is, you will look back in a year and be amazed at how good she is now.

It's really hard. And we found that we'd come up against one problem, solve it, and then suddenly that problem was irrelevant because something brand new and unexpected had cropped up that we didn't know how to solve.

But there are moments of hilarity, too. It's not all gloom and doom. I'm thinking of the time my brother had to race to unplug my mom's stove while she was in the assisted living dining room, and barely made it out before she came back. Or the weekend I spent trying to get her to take a bath -- I swear to you, I was on a mission -- and right before I had to go to the airport, I succeeded by bribing her with a beer!

Thinking about you, Vivian. I'm definitely here anytime you want to unload.

Anonymous

One more thought -- I called my mom every day in the late afternoon. Those calls were really important -- sometimes she was lively and funny, other times she would put the phone down and wander away and forget I was there. But it was helpful to me, loving her from a distance, to have daily contact.

viva

Veteran

Alicat, thank you for your words and your encouragement. The sisters and I do laugh a lot, thankfully, when we are together. It's harder to get to that place by text. But most helpful was your encouragement to call. I have been avoiding the phone because the calls feel so different. But you are right -- I have to treasure where she is right now. She'll be somewhere else in six months that will be even harder. Thanks for that -- will call today.
xxx

Aquamarine

Veteran

I have read this thread and don't have experience with dementia, but I do have experience with aging parents. I want to echo Alicat...call your mother as much as possible. Even if the calls are sad or frustrating, you will not regret making them. And when she is gone, you will know you did the best you could and eventually the good memories will outweigh the bad ones.

Aziraphale

Veteran

Yes, I can absolutely relate. Well, partly. I wrote about this several months ago, out of desperation (people here were very supportive). My mom had a breakdown over the summer following a trip overseas. She has dementia. It got rapidly worse. She has improved since then -- the doctors are calling it a delusional episode -- but she's still got dementia, of course, and she's slowly declining.

At least you loved your mom. I have more of an uncomfortable ambivalence. I'm not sure if it's harder to watch the deterioration from afar of someone you love, or the deterioration of someone you're partly responsible for and with whom you have a history and a complicated bond, yet whose absence you won't miss. As the saying goes, it's better to have loved and lost than never to have loved at all. Cherish the good times.

12