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I have very mixed emotions...not really sure what I am feeling. My mom has Alzheimer's and has once again taken another step down. I had a birthday last month and this is the first time that she forgot it. I called her and told her, because I knew if she did remember it after the fact, she would feel just terrible, so I tried to be very light about it . She has always called and sang "happy birthday" so I began singing it and all it did was make her feel bad, which certainly wasn't my intention. She is living with my sister, but she didn't bother to remind my mom. She is holding a major grudge against me because she feels I should be doing more to help in mom's care, even though I've told her I simply cannot. I am doing as much as I can. I am my mom's POA and I have told my sister repeatedly to get additional help when she needs it Right now, she has an aide there 6 days a week, from 8a until 4p, and my other sister and I pick up my mom on Sundays, so we're talking evenings really. I told her to find someone else to pick up the hours when she wants to get away at night, that mom can afford it, but so far, she hasn't done it, just keeps asking me to help out more.

Mother's Day is now just another day for me. It's so hard to express. My mom is here, alive, and yet, I feel as though I have lost her. I just spent the day with her yesterday. It was a beautiful weather day here and my husband and I took her to an outdoor shopping center and we looked at all the flowers and I couldn't get her to understand that she could not pick the flowers, but she did seem to enjoy looking at them. We took her out for coffee and a yummy bakery cookie and went back to the car, where she announced she was starving so I said "but you just had a cookie and coffee" -- and the cookie was quite large -- and she said "I did?" It couldn't have been more than a few minutes... I guess I could go on and on giving examples like this, but those of you that are dealing with dementia understand. Every time I am with my mom, I go through a day or two of extreme sadness. I keep telling myself she is happy in her dementia world, but I guess it is me that is having such a tough time dealing with it.
I think anyone who is caring for an aging parent whose condition is slowly taking them away from us suffers extreme sadness. The holidays, birthdays, and special days like Mother's Day tend to intensify the sadness because we are uncertain as to how long we will have our loved ones with us ... mentally as well as physically. And, to make matters harder, we know that it's not just the physical aspect of caregiving that drains us, it's the emotional drain that can take its toll as well.

This Mother's Day could quite possibly be my mom's last. I have overcome the hurt and anger I've had with her and am now trying to focus on having her remaining time as comfortable, happy, and secure as I possibly can. For Mother's Day, I will be going out to dinner (briefly) with my youngest daughter and her husband. But, before I go, I plan on giving my mom a special little brunch with ice cream cake for dessert. I know her eyes will light up and she's smile a happy cock-eyed smile and be content for the rest of the day.

If we can make our moms smile and laugh even for a brief time, I think we have succeeded in giving them a happy Mother's Day. And, if we can smile and laugh for just a moment with them, then we will have had a happy Mother's Day too.

Dee
Woops forgot to type in all fields .
Mother's and pride . . . and so many feelings ! Goodness I just thought I'd share my story ( can't type it again at the moment ) but I'm sure many other people need to talk about this . .
Mainly my Mom is incredibly proud/independent and does not say what she needs wants . . . can barely make it up stairs and has incontinence issues . .

How do you say good for you Mom for making it up stairs when you know she is cursing every move and how do you say woops had to wash my pants Mom at dinner ( I sat in her chair by accident after she had an accident ) and looked at me like why are you doing wash at dinner time??

Help!

Pride and tact and it's hot! here so off I go . . . .

Anyone else?

seba

That's what I originally typed . . . the first post re dementia I really get . . .
My Mom had a stroke 2 years back and had both of her knees replaced so I am dealing with 'loss' and anticipitory grief .just now I asked if she might pick up some yarn for me with guilt issues wazoo for me . .
I know she can do it but on the other hand I know I'm asking alot . . . because she IS having a hard time walking and we used to go walking/shopping etc.

Then as a Mom she will go . . .

I think the main issue for me is something so many people don't 'get' who aren't 'caregiving' and that is simply~
loss . . of some sort or another .

As far as your sister?
That's a tough one . . you probably feel like criminey ! I'm doing as much as I can and then you need to set boundaries and care for your Mom and then your mind is trying to sort all that out let alone the biological bond of mom/daughters . . .

wow . .

Logically I understand what Dee is saying emotionally I have sad feelings too . .
and I'm just exhausted . .

My Doc has said my Mom is giving me a 'gift' . . it may not be pleasant but it's a gift . think he is saying that at the 'end' to treasure every moment and it's hard but she's my Mom . .and that I'm strong . . .

still I really do get that first post .

I hope there's a sigh of thank god someone gets it there .

For me it was 'good' to know I'm not alone too . .

seba
Dear Plink, I don't believe a word of your post. Mothers day means even more to you now! I am sure of that. Now, both of us both go to a cemetary and visit our Moms gravesite and leave flowers. But, your Mom still resides in your heart and will till you stop thinking and loving her. This is my 5th Mothers Day without my Mom, and every one, I spend crying and remembering all the good times. Mothers Day is just that-- A Day to remember our Moms!!!!!!!! Please let your pain out and admit, you, like me, are lost without our Moms.... I pray I have not offended you or anyone else.
Hi there ..thought this would be a good topic for people to vent . . .plink I think I get what you are saying re not being able to see/ feel/ your Mom . .
My Mom is still alive yet I see her so much less than before . .

The 'physical' touch/hugs the core of our beings that only can come from our mothers is unbelievable hard to put into words . .

I'm 'glad' you're going to the cemetery to 'visit' your Mom . . . hope you can cry and be gentle to yourself and I will try to be to myself too. . .

Yes it is incredibly important to celebrate our Mom's it's also to me important to acknowledge our feelings of 'loss' and 'gain' however you want to look at 'change' .. for what that's worth ~ did I get that 'right' ? What you were saying Plink?

seba
Dear Plink, you misunderstood my post. NO NO NO, I can see by all your posts before how very much you loved you Mom. I realize how lost both of us are with the loss of our Moms! Vent? Totally understood. I wish I could reach into this computer and give you a big big hug. I know I sure could use a hug from someone who has these same feelings. My husband is really sweet about my feelings, BUT, well, you know how men are. Sorry guys! Maybe we need a 'post caregiving' topic in here, just an idea. Again, I am so so so so sorry if I raised any dander with my last post. GOD BLESS ALL OF OUR MOTHERS!!!!
So many feelings here ... loss, grief, anticipation of things yet to come. Anger, frustration, helplessness. We are primarily daughters who are caring for or who have cared for our mothers.

Seba, you are absolutely right. The feelings of loss and grief are very real even though our moms are still with us. They are with us, but yet they are not. We are in mourning because we have, in a very real sense, lost the moms we grew up with. We, too, miss the hugs, the shopping, the girl talk, the giggling over silly things. Our moms are with us, but yet they are not.

Plink, grieving has no timetable. The sense of loss can be with us forever. I know I miss my dad terribly even though he wasn't there for me for most of my life. I still miss him and I ache every time I look at his picture. He's been gone for over 7 years, and I miss his wonderful laugh and voice. But, I look at his picture every day I tell him how much I love him still, and I can imagine him giving me a hug.

Plink, take your time in healing. I pray that you can think of your mom and smile. Keep the smiles close to you. As a mother myself, I can say there is nothing greater than the love of a mother towards her children and their love towards her. It is truly a gift to be cherished.

And, yes, a "post" caregiver area would be helpful. Our hospice staff is trying very hard to prepare me for when my mom's time comes, and will be there for me afterwards. Yet, I already know instinctively there will be a huge void in my life. Perhaps, caregiving is the easy part ... going on afterwards is the hard part.

My Mother's Day didn't turn out as planned, but then, nothing I plan turns out quite like I hope. My daughter, who was going to take me out to dinner, ended up in the ER on Friday with a kidney stone and is kind of in la-la land. She's going to be okay. The ice cream cake I ordered was accidentally sold to someone else. The gowns I bought for Mom, well, she doesn't like them. So, it's a normal Sunday. Do laundry, clean house, fix dinner, and try to psyche myself for another work week. But, I have learned to take one day at a time.

God bless ALL of you.

Dee
diane marie......it's really hard to understand each other with words isn't it??
I did not take offense to anything you said, seriously, maybe I just came off a little strong......so very sorry about that.{{{{hugs}}}}} dh said I have been like that all week, kind of moody and snappy.......

Dee thanks for the kind words {{{{{hugs}}}}} for you also.
I am so sorry that your day did not turn out like you had wanted.
I am glad that you are working with hospice.......they are a wonderful agency. I only have one complaint about them......they stay with you for a full year after your loved one has passed then it seems as if they leave you....then you feel all alone once again. I don't know what the answer is.+

I also think there should be a 'after the caregiving' forum here at the boards. I think it would help so many of us.

[This message has been edited by plink (edited 05-14-2007).]
Hi there . . . ! Vote 3? for post care giving topic or 'secondary caregiving' and anticipitory grief . . .

I'm trying to remember is it Diane Marie sorry . . . can't remember who typed what but the words are in my mind~ I am so sorry your daughter ended up in the ER! How are you ?????????

That mother daughter bond is definitely hard to put into words but you did so well . . . I very much miss the girl talk the giggles the coffee time with my Mom without my Dad or my husband around ( I'm also sorry guys! )

Maybe same sex bonds another topic?

My Dad has been incredible! throughout my Mom's surgeries but he also is planning her going onto antidepressants which I personally don't think are the solution for her . . . she's down because they sold the house they raised her kids in to one she dreamed of then almost immediately had a stroke and then 2 knee surgeries and my Dad had angioplasty she lost several friends . .when we were there yesterday I sat down and knit with yarn she bought for me ( another thing I miss hey Mom could you pick some yarn up for me? or could you meet me for lunch before my hair cut?) even tho' I'm 44. . . . she instantly pulled out her needlepoint . . .

Anyone would be down with all she's gone thru . . . we come up and she perks up . .

I go kickboxing and I feel better or yoga or swim . . . may try Karate .. .

And I just realized I hope Plink I'm not minimizing what you are going thru . . I'm just venting myself and hoping that some of this helps you in some way . . I'm not going to say how since we all grieve in different ways . . .

Gosh now I! hope I'm not offending anyone I'm venting a lot! here!

I wish I could reach into the computer and hug whomever wants a hug too . .

with that

Yes!

Post caregiving / secondary caregiver/anticipitory grief . . . ?

xxxxxxxoooooooxo

seba
It was just me, Seba ... the feeling of tremendous loss even though our moms are still with us. And, you know what, I think they miss our "fun, girl times" as much if not more than we do. How terribly frustrating and frightening this all must be for them!

I'm just thankful to hospice for helping me overcome the old hurts and pains from the "old" days with my mom. It is like a huge weight has been lifted off my shoulders. I no longer resent her ... I feel a deep sadness over the situation. Yes, I still get cranky with her from time to time. After all, I'm only human too! I get cranky with everyone sometimes ... sometimes all in one day!

You are a good and loving daughter, Seba, and it is so obvious that you are deeply concerned about your parents. And your suggestion about a "post" caregivers area is wonderful. I have read so many posts from women (primarily) who are having such a hard time. I wish I could do something to help ease the pain. Plink, and all of you who have suffered the loss, please keep posting!!!! Believe it or not, we need you as much as you need to express your feelings!

Group hug to all,

Dee
Hi Dee, Plink . . and whomever else!

1. Please take back the 'just' . .
If I go away quickly it's cuz I have laundry going and 16 other things but this place is my 'sanctuary' to go bleeehhh when I know you guys will understand! And Dee I think you came up with the post care giving idea! Uh, don't know if I miss my Mom 'more' maybe differently . .
I'm proud of you Dee for expressing things so well! Yes I miss the fun outings and well today I was just angry ( Dee kudos for acknowledging you get /got resentlful toward your Mom ! I have trouble with that one . .):} ~ which is why the idea of karate added to kickboxing and yoga . .

Today is laundry day and 'little' things like Mom coming over to give me quarters!

I never thought of that as so important but it is . .
walking on the beach I know we'll never do again . too hard on her knees .

driving will come again but getting her to acknowledge she can is another thing .

She is so close to a yarn shop ( I knit ) but I can't say hey Mom could you pick up this yarn for me please?

oops ding laundry done . . . .guilt . . guilt for logging off . . . hugs back!

I'll try to put my whips away .. . .

There was a wonderful post in miracles? I think? Might want to check that out . .

Thank you Dee for saying I'm caring . .

Now to 'care for myself . . eek . . '!

seba
back again . . ugh laundry . . .

You know I think it might be really hard on guys too because I know my husband will fly into a rage but if I listen and go OK you probably feel . . x y ( be a minder lol sorry guys! ) maybe this will help guys out there we need help! because we women get on overload those hormones cortisol fight flight things go wild especially with our parents 'ill' or 'gone' and to try and second guess who is thinking feeling what while we tend to forget ourselves is not only overwhelming it's completely exhausting . . . . for me anyway . .

Dee you said something else I forget what but it was incredibly insightful .
I'm going to go ahead and create a post care giving topic and see :} . . .

Plink yes if you feel like it keep venting it's really important . .

for me anyway . .

seba . .
:}
MIMI I wrote this when i was and am in the same place as you. I felt ashamed of not wanting to hear her words her talk, I did not want to see my mom in this state.I did not want to fear being in this state myself. I wanted my brother and sister it share this burden with me but they can not come to turms with our living loss. I go back and read it time to time to help me come to terms with her loss not mine.

I am already gone Buried Alive

I have Alzheimer�s disease
I�ve had it for some time
People say I not in my right mind
My words are strange they mean nothing to them
But I try so hard, I can remember that hymn
Will it be better if I could just stop?
If I had no words no sound no talk
I see in their face how frighten they are
Like someone who has lost a friend
The words won�t come, they have nothing to say.
I am already gone, buried alive?

They don�t need to visit me; I can not remember their names
They don�t need to visit, they have nothing to say
When they were small and did not know my name
Couldn�t utter a word
Couldn�t feed themselves
Couldn�t put on their on clothing
Couldn�t walk
Couldn�t change their own diapers
I had something to say, to love, to kiss, and to touch
They did not give me back much a smile a giggle a drool
Are we so different now?
I can still enjoy your love, your kiss, and your touch
I am, already gone, buried alive

This tired sad lonely old soul will some day find peace
I am sure then you will find just the right words to say
Of all the wonderful things you had take away.
But when you alone and just one face you see.
What will frighten you then, the way you left me alone?
How you could have enjoyed my rambling words for just one more day?
How you could have held my hand and given your kisses away?
How you deprived me of just seeing your face
Or will it be the thought of your fate
Will you be left alone, already gone and buried alive

By Melinda Horvath December 11.2006
Dear Melinda,
Thank you very much for sharing your beautiful poem with me. You obviously wrote it right from your heart.

Over the past four years, I have spent many hours reading as much as I am able concerning dementia and Alzheimer's to try and have a better understanding of the disease, to better understand what my mom is going through and yet, when I'm with her, I still become so upset seeing what is and has happened to her. I think a lot of people are under the misconception that Alzheimer's just takes away memories when in fact, it destroys so much more and can actually change a person's personality. Fortunately for me, my mom's personality has changed for the better; she's a much warmer, more loving person now, which is certainly easly to be with, and yet so confusing, because honestly, my mother wasn't a warm or a very nice person. I've mentioned before, she is a holocaust survivor, having gone through slave labor in ten labor camps over a three year period. I understand that an experience like that can change someone's personality, can take away their heart and soul and that is what happened to her, leaving someone filled with rage and resentment and sadly, she took that rage out on her children. No, it's not her fault, but we still had to live with it our entire lives. Now, as an adult, nearly a senior, I am coming to terms with the verbal and physical abuse and all the hateful manipulation. In some crazy way, Alzheimer's is a gift in that it has given me a loving, caring mother and the gift to her is she now has no memory of her time in the camps, something that had haunted her for over 50 years.

My mother is extremely needy now, very insecure, all part of the disease. If it were up to her, she'd have her 3 daughters by her side 24/7 and her life would be complete, but then again, that is all she ever wanted. It didn't matter whether we had a life, or if our lives were happy, as long as we were available to her and took care of her. I have actually been taking care of my mom since I was 13, when my dad died. I can't do it any longer. Once she was diagnosed with Alzheimer's I took her into my home and lovingly cared for her for a year, but it affected my health to a point where I simply couldn't do it any longer. Now, it's taken me almost two years to get myself back to a healthy state. I work full time, Mon - Sat, and I am with my mom every other Sunday, with my other sister being with her on the alternate Sundays. That is all I can do right now.

Melinda, I know what you're feeling. I understand the heart of the caregiver, because I did it, even though it was only for a year, I know what it feels like to be the one who is 24/7, who has no one else to depend on, who spends hours and days with the Alzheimer patient, listening to the same words repeated over and over, the same questions, the blank expression on their faces, cleaning up potty accidents, helping them out of the chair, across a room, up the stairs, changing their clothing, putting them to bed, giving them a shower, making meals. I did it all, so I do understand what you are feeling. I've come to realize that some people are somehow able to manage the care and still able to care for themselves. There are some of us that simply cannot. When I've had this discussion with my sister, her response has been "well, I just let it roll off my back"...I guess that's the basic difference...I never could let it roll off my back...I took it all to heart, literally, and ended up with angioplasty and a stent placed...

Again, thank you for sharing your heartfelt poetry,
Miriam (MIMI)

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