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 Mom's getting worse. 
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Mom's getting worse.
I think Mom is entering another stage in her dementia. When I visit, she doesn’t know who I am about half of the time. She seems to know that when I am there, I am there for her – as opposed to the staff that she has to share – and that I respond to her needs right away. But she doesn’t know my relationship to her. When I tell her I am her daughter, she smiles. But I don’t know if that is recognition or if it sounds like a fun game to her. I do know that after an hour, she’s back to not knowing me. I know this because of her reactions to me, at which point I ask her if she knows who I am.

Mom is also tired more often. And it seems to me that she is having more trouble with transfers, not knowing what to do with her feet, right from left (when an aide tries to direct her that way) or even understanding that she needs to move her feet. I have to touch the foot that needs to be moved and then touch where she needs to put it. She also tries to sit before her chair is in the right place. I do see that this is common in the dementia unit.

Mom now cries when I leave. She doesn’t know me, but she cries anyway. This is really hard on me because I have what my family calls a “soft heart.” I tend to give everyone as much as I can because I hate to see anyone in need and, in Mom’s case, I need to believe that these last years are as easy as they can be for her.

I am able to ask Mom yes or no questions, though she now get shakes and nods of her head mixed up. Because so many people in the unit have expressed that their parents are very much a part of their life, though, of course, they passed a long time ago, I asked Mom if her parents seemed to be close to her – real to her. She says they are. In a way, this is a comfort to me – knowing that someone she loves as much as I love her is a real presence to her. It also comforts me to believe that when (not if) I am in her place, she will be a presence for me.

Craig, I have once or twice asked her about some things that you have expressed, wondering if that is what she experiences. This helps me because she doesn’t have words anymore to tell me what she is experiencing. She has indicated that yes, this is what she is feeling too. Particularly that she has so many thoughts in her head that she can’t express. I think it helped her, at that moment, to know that someone else feels that way, too. So, thank you Craig. Please keep expressing your feelings. Your thoughts are helping me understand my mom and how she feels. I really understand now that the intelligence is still there. It is just that she can’t express it and sometimes misplaces it. But she is still my mom.

It’s hard to reconcile the dichotomy between Mom’s intelligence, which I am sure is still there, and her inability to move her feet correctly. But both are present. I’m sure of it. I really wish we could still communicate. I’ve thought of using picture cards or some similar tool for communication. But Mom hasn’t really used anything else I’ve come up with to help her, and I don’t know that she would use these. Is it worth a try or would it be stressful for her? I’ve also thought about a wheelchair tray called a communication tray, but I don’t think she would be comfortable with a tray on her wheelchair. I wish I knew what to do for her.

I'm so glad I have you all to share my feelings with. Thanks for being here.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Jul 11, 2011 1:38 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Mom's getting worse.
Kate, I'm sending you a great big hug. It is such a terrible disease. I know how helpless you feel, I know how upsetting it is not knowing what to do, how to help, not being able to help. Thank God, Dad can still recognize me, but since his last decline, he has no interest in anything. I used to read the paper to him, he used to watch tv. He now just lies in bed all day and stares at the ceiling - it is heartbreaking. When I ask him what can I do to help him, he just smiles and says 'nothing'. I think he is trying to spare my feelings.

I too have a soft heart, hate to see anyone in need, try to make it better for them, and it breaks my heart when Dad cries, and when I feel I can't fix this.

Go with your gut instinct when it comes to communication, and if you think she wouldn't like the tray on her wheelchair, you are probably right. You know her so well. Dad can still talk to , but most of the time shoos me away to 'look after your mother'. I think he sees how distressed I am at his condition. I try to hide it, but we were always very close, and he can read me like a book. You know best when it comes to communicating with your Mom, be it holding her hand, or looking in her eyes. My heart goes out to you,
God Bless,
Ger xx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Mon Jul 11, 2011 2:16 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Mom's getting worse.
Kate, Ger….

Your Loved Ones are in good hands….yours

Knowing that my children will be there….when its my time….you guys are showing this to me…

I am learning from you….what I can do now to make it easier for them….I realize that I can't remove the experience….they will have to have it….just like you

you make me feel hopeful…that someone will be there to comfort me like you are now…

live every moment that is yours to live to the fullest…I believe you both are doing that….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Mon Jul 11, 2011 3:28 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Mom's getting worse.
Kate, Ger,

I can't say it like Craig did (his words were so well written) - but I just want to echo what he said - I feel exactly the same way - You are very special people as are all here on this board....Thank you so much for all you give and the hope you give.....I am sorry for what you are going through and will keep you in my thoughts -

Best wishes,
Tonya

PS Kate: I think I would like to see photographs if I might be in your Mom's situation - even if I couldn't say anything about them ....maybe just a few at a time - so as not to be overwhelmed and of beautiful things (not necessarily family photos - or maybe one or two happy ones - but I would love to see pictures of birds, cats, the ocean...a sunset....but then that is just me - you know her best and what her loves are......

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Mon Jul 11, 2011 4:08 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Mom's getting worse.
Thanks so much, Ger, Craig and Tonya. You are my strength.

Craig and Tonya, while you can still write, give your families your thoughts. Not just about how you want things handled and Power of Attorney and such. You both write beautifully. Maybe you could just write a few lines about what is on your mind and put them in a folder for your family to read when they need help. It is only because I know my mother so well that I can guess what she is thinking. Having random thoughts she has had would mean so much to me now.

(Craig, I'd like to share the lines you have written here with the team at Mom's care center. They would be such a help to other families. Would that be OK?)

You are blessings to me.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Jul 11, 2011 4:27 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Mom's getting worse.
Kate….

those words belong to you….

without your inspiration….

they would not exist….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Mon Jul 11, 2011 6:27 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Mom's getting worse.
Kate,

I think it's a great idea for us to write things while we can - I want to help my husband help me and try to ease his burden anyway I can....But at this stage, I have no idea what to write...can you be more specific for me about what things would be helpful for him to read later? Sorry I also have trouble with abstract thought or creating writing without a specific assigned task, if that makes any sense....What specific things should I write about for my husband? Thanks for sharing this with us......It's really wonderful that patients and caregivers can help each other in this way......Craig really has a gift for writing....I used to, but I am sorry to say most of it is very difficult now....but I can still write and I want to do this for him....

Thanks so much and I am still thinking of you....

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Tue Jul 12, 2011 9:58 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Mom's getting worse.
Craig and Tonya:

Your courage in facing this head-on is awesome. Perhaps just writing down your thoughts (nothing so formal as a journal--that would give me writer's block) would be of help.


Tue Jul 12, 2011 12:44 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Mom's getting worse.
Just small, simple things like "I heard you humming that song from our wedding" or "You were working so hard today, I wish I could..."

Or for sons and daughters: "that ball you caught in your baseball game today was really something. I'm proud of you." Or, "watching you grow gives me so much joy." Or, "I wish I could ..."

Write anything. Your feelings. Family history. Your memories. Anything at all. Scribble them on a napkin, a gum wrapper, whatever is at hand and put them in a box. You could maybe label it "when you need me" or something.

The same things you write here, too, will be important to your family. Things about how this situation is affecting you. And it doesn't have to be words. Pictures, photos or drawn, tokens for remembrance would be special.

Last night, as my sister and I were sorting through some things, we found a small basket with tokens from my great grandmother's life and even her mother's life. I felt really connected to them at that point, though I'd never known them.

By doing this, you are giving them yourself in a lasting and tangible way. Just remember, no one is looking for Emily Dickenson or Robert Frost. Just you is more than enough.

I hope this helps.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Jul 12, 2011 1:07 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Mom's getting worse.
the hardest thing….for me….

I have this thought…..any thought….and it is a real winner….

maybe its a million dollar idea….a billion dollar idea….

its a world peace moment….

or its something real important….like I remember the time one of the kids smiled back at me…..

poof…its gone…

……………………………..

the origination of ideas is still intact…maybe even more so….I think it could be a brain function again….it knows time is on the essence…it is trying its hardest…the result is just not what is expected or desirable…

I am leaving bread crumbs….here…there…everywhere….

if it was me looking for them…later….I would find them….as far as others….who knows…

I just gathered up 15 old rolls of film out of the garage and had them developed…..looking for more….

started an online photo account for my family…..hope to scan everything I have….

I am creating the stuff….it is hopeless to think I can organize it….

there is a great desire to leave it all behind where it can be found….(hint, hint….don't put this off) DO IT NOW!

sorry to sidetrack your thread Kate….it is all life though…..

I was there holding my Dad's hand when he passed….I left the hospital long enough to go pick up his mother and bring her to his side….I will share on another thread….
I had to sit in the back of my Mother's funeral….I crossed her new husband and my sister….by helping my Mother arrange hospice in her home….they wanted her to die in the hospital….I will share elsewhere...

Don't miss a minute of this part of your parents life….

Live each minute for you….help them live each minute….to the fullest….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Tue Jul 12, 2011 1:32 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Mom's getting worse.
BayouCajun wrote:

I was there holding my Dad's hand when he passed….I left the hospital long enough to go pick up his mother and bring her to his side….I will share on another thread….
I had to sit in the back of my Mother's funeral….I crossed her new husband and my sister….by helping my Mother arrange hospice in her home….they wanted her to die in the hospital….I will share elsewhere...

Don't miss a minute of this part of your parents life….

Live each minute for you….help them live each minute….to the fullest….

THANK YOU CRAIG, thank you, from your parents, from my father, and from me x

_________________
cared for Dad who passed away on January 28th 2013 R.I.P.


Tue Jul 12, 2011 2:51 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Mom's getting worse.
there was another thing….before its gone….

something from Kubler-Ross….(a must read….On Death and Dying ~)

I included my children in my parents Deaths….

for to exclude them….would deprive them of the learning experience of what to do when I die….

and to know what to expect when it is their time to live through it and to prepare their children for when it is their time….

Kubler-Ross….story of farmer who was dying and brought all family and friends to his bedside and finished his business….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Tue Jul 12, 2011 3:11 pm
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post Re: Mom's getting worse.
Kate, and Ger, thank you for posting. Reading about your mom feeling that her parents are close to her has given me some comfort that maybe my mom won't feel so alone as things get worse. And maybe my mom has some of her intelligence left too. Every once in awhile she'll crack a good joke and seems to get a kick out of random things so I know she's still in there even if she can't really communicate as well anymore. I hope her sense of humor is the last thing to go.

Craig, Tonya, I can't tell you how invaluable your words are to me. I can imagine how much your loved ones will appreciate reading anything you write. Your perspectives really help me to understand better what could be going through my mom's head. I always wonder if she's afraid but I know she wouldn't want me to know even if she was. She is the strongest person I know so I can only hope I can keep going and supporting her and my dad as much as possible.

You all inspired me and I called my mom just now since I've been thinking of her a lot the past couple weeks (she's been declining a bit recently). It's hard to have a conversation but she picked up the phone (win #1!) and she said "that would be good!" when I told her I'd be there to see her in a month (#2!). She sounded happy to hear my voice and she said that she loved me too when I told her that I loved her and missed her and would talk to her soon. I'm trying so much to appreciate those happy things that I still have instead of letting the sad things get me down. Thanks to all of you for helping me to realize that too.

_________________
Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Tue Jul 12, 2011 4:54 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Mom's getting worse.
Thank all of you!! Kate your specifics helped a lot....to me right now my feelings don't seem very important - but I see how they could be later...It is also a great comfort to know that someone will know I am always me....not matter how I might change on the outside or to the outside world (and I have already changed some) but inside I know who I am even if I don't act the same anymore and I know what I believe in and who is the essence of me....I like to think I will always have this inside and know it even if I can't express it...or I express myself in a way that "would not be as I would like" and that someone who loves me - like you all do your loved ones - will know I am still in there - the me I have always been and always will be.....

I don't feel very courageous at all....but you all help me a lot.....and my husband....I will try to do what you suggested....I have noticed I too am starting to leave a trail...I've been telling lots of stories to my husband, about my childhood and other things that I hope he can remember - but he's not a tape recorder :) so it would be kinder to put it down another way.....for my brother too who is 5 years younger than me and maybe even my parents - one never knows....I also collected some pictures already starting from when I was about 6 months old and going through time to now or nearly now.....it was useful to me to look over my life and remember....some things were painful but mostly it felt sweet....like my life mattered/matters.....to someone....

Thank you all....Most of all I want to ease my family's burden - I already feel very guilty about the pain my disease will cause them in advance - but you giving me something to do that could help just a little makes it a little easier......

Best wishes all,
Tonya

PS I just shared all of this with my husband and he told me he would like me to make a scrapbook of my life for him - I told him he would have to help me organize it - but I think I have time (in terms of my cognitive function) to do a little each day and put in stories and pictures and memories......Sorry also for sidetracking the thread - but thank you all so much!!!!

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Last edited by Tonya on Tue Jul 12, 2011 8:15 pm, edited 1 time in total.



Tue Jul 12, 2011 6:48 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Mom's getting worse.
Tonya, from a carer's point of view - A loved one can never be a burden. We do this caring out of love, not out of a sense of duty. I am sure if your situation were reversed, you would care for your husband/parent/child. Do not feel guilty - you are a victim of this disease, you didn't ask for this to happen to you. It will show you just how much you are loved to see all those closest to you rally around when you need them.
Ger x

_________________
cared for Dad who passed away on January 28th 2013 R.I.P.


Tue Jul 12, 2011 7:46 pm
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