weeping (anyone who's had a loved one with dementia, or anyone else)

[bertha katzenengel]

My family (well, everyone but my father -- my sisters and my uncle) sends me "Grandma Reports" every time they go to visit her at her nursing home. My grandmother is 88, suffers from severe dementia, and now has terrible pain in her back and hip although nothing is broken. They all live in Southern California (I'm transplanted to Maryland).

This latest Grandma Report from my eldest sister. This is just snips from a very long email.

Grandma . . . would not accept it when I told her repeatedly that she shouldn't walk, and why. She stood up, but three caregivers were there in one second flat to tell her she had to sit and be wheeled around. They told her and me that she can't walk.

Grandma still wouldn't listen, as she obviously doesn't remember how badly she's hurting. She told the caregivers, "This is my daughter. SHE will help me." . . . it took a long time but she finally sat down. She said she felt dumb, and was very embarrassed. When I asked her if she wanted to go to her room, she said she didn't know where it was. I said I would show her, and even though she was not thrilled about rolling backwards while I pushed the walker, she let me take her to her room. Looking at her pictures helped her to realize it was really her room.

She looked so tired, but didn't want to lie down. We chatted for a few more minutes, then I had to go. Grandma again insisted upon walking me out. She almost listened when I reported "the doctor said you can't walk on that leg," but she proceeded to stand up. What could I do? Sit on her? I protested all the way, but she had to try.

When she puts any amount of weight on her right leg, THAT'S when she knows she can't do it. She really cannot walk. . . .

So there she stood, trying to walk. She would not sit down on the walker again. I helped her to the bed (we were right next to it), she sat down, and just then the caregiver came in to take her to the bathroom. I told Grandma again that I had to leave, and gave her a kiss, but she grew a little angry. "I'll go with you!" I told her she couldn't because she was hurting so much. She didn't believe me. The caregiver told me, "It's okay; you can go." So I kissed her goodbye again, told her I was sorry, and walked away while she still argued with the caregiver.

I could still hear them -- Grandma arguing "She's my daughter!" and the caregiver explaining. When I was about halfway down the hall, Grandma yelled "SUSAN!!!"

That Grandma knows my sister is new, even though she calls her her daughter (Grandma has only sons). She also recognized my other sister, saying "You're a <our last name>!" and my uncle was her brother, not her son. This recognition -- mistaken though it is, it's close enough -- is all new. Usually she just says "are you here for me?" when we arrive, then introduces us to anyone as "my people."

But the recent reports I've been getting, and this episode with the pain, and her calling after my sister like that -- I know my sister. I know she wept all the way out, and sat in the car to compose herself before driving home. I know the extreme guilt she feels, but more than that, she feels loss.

I don't know how my sisters experienced life with Grandma, but for the last two years of my "official" childhood, she was the closest thing to a real parent I've ever had. Long story short, she sold her house and moved so I would have a place to live and not have to leave my high school. With that act, this woman showed me more love than her son would be capable of in ten lifetimes.

Grandma just wants to go home to be with Jesus -- her God is the one thing she's never forgotten -- and that is more important than my getting to see her again. Still, I'm selfish. I'll be home in November. I hope it's soon enough to see her again, because I sense that the merciful end is coming.

[Midlodemocrat]

1. Bertha.

I am so very sorry. My dad had Alzheimer's and passed from it a year ago last weekend.

He had the same issues, couldn't walk, but couldn't remember that he couldn't walk. It was heartbreaking.

You and your grandmother are in my prayers.

:hug:

[bertha katzenengel]

3. i had to tell about this somewhere

no one I can talk to here

thank you, Midlo.

[mcar]

19. Alzheimer's is such a sad, cruel disease

It might not seem so now, but in time you and your sisters will be able to remember your Grandma as she was, not as she is now.

We lost an aunt to dementia. It was so sad and frustrating to see this independent, feisty lady brought down like that.

I lost both parents to lingering cancers. Even though they had their mind intact, it was so painful to see their bodies deteriorate a bit at a time.

I hope Grandma goes home to Jesus soon so she can be at peace. :hug:

[kikiek]

2. I am so sorry. How lucky to have love in your life such as hers.

I am sure you have many good memories. One of my patients daughters made up a video of old pictures and some film. I think you can make them on CD now too. She put them to some lovely music and plays it over and over for her. Her mom loves to watch it. It is very hard to go through this disease with all its twists and turns. My very best to you and your family. Don't forget for anyone who might benefit it helps talking with other families going through the same thing. I am sure the social worker where she is at would know of support groups.

[bertha katzenengel]

9. thanks, kikiek

One of my favorite memories is of her bitching to herself while washing dishes about what an asshole her husband was. :rofl: This good Christian Mennonite woman using cuss words... I was shocked!

[tjwmason]

4. My grandmother had dementia

I was too young to notice much at the time - but could see the strain it was putting on my father even way back then.

:hug:

[caty]

5. My mother passed

away three years ago. She had uncontrollable diabetes, pulmonary and cardiac problems, and the lining of her stomach had worn so thin that in bled and made her anemic. She also had dementia. During the last year of her life, she did not know I was her daughter. She thought I was just some nice lady who came to visit her everyday. She thought my brother was my dad. It was sad, but she seemed happy with her beliefs and that made it bearable.

[kikiek]

8. I think it makes a big difference when they're calm about it. Where they

think they are at makes a big differenc, and the level of awareness of what's going on. Such a sad disease. Heartbreaking.

[caty]

15. We had been told

to always tell my mother the truth if she asked about anything. She asked me where my dad was once, and I told her that he had passed away in 1976. She acted as though it was the first time she had heard this and cried. I felt so bad. Then I realized that when she asked, she was thinking of my brother. From then on I lied. When she asked where my dad was I would tell her he was at home and would come to see her later that day. I told her anything to make her happy. It worked out much better.

[kikiek]

16. I agree.

[WCGreen]

6. The mother in law is slipping badly.....

We have mourned he fading away and now just do what we can to make her days happy..........

Take her for a ride, try to jolt a memory or two....

And then, take her safely back to where she lives....

The facility is nice. She is actually with some girls she went to Junior High with.....

Ah, the visits are hard but I always feel better when I am with her....

[Misunderestimator]

7. So sorry, Bertha.

:hug:

I hope you are able to see her again before she goes, and I wish peace for her and all of you.

[Mikimouse]

10. I am sending hugs to you Bertha. I can understand where you...

are coming from. My mother died in 1990, at age 67, of metastatic brain cancer. Her symptoms were very similar to what you describe. My heart goes out to you and family. :hug:

[fudge stripe cookays]

11. So sorry, Bert.

The only grandparent I ever knew (my mom's mom) left us back in 1994; she'd had a stroke that affected her behavior center, and it gave her dementia type symptoms.

She'd call her sons her brother's name, and call me my mom's name. She'd always been this very gentle soul-- lived for pinochle and hot tea and dominoes. And she'd get angry and throw forks at people.

This has to be so difficult for you. Especially not being close by.

You're in my thoughts, honey. And so is your granny.

FSC

[Cathyclysmic]

12. So sorry....

It's a terrible feeling to have a family member in pain that you can't help. :hug:

[bertha katzenengel]

30. thanks, Cathy

It is.

PS all: again, I'm sorry I haven't time to reply to everyone. And I am sorry for all your losses, too.

[Blue Diadem]

13. Oh Bertha, I'm sorry

Your Grandma sounds like a wonderful woman making that move for you. :hug:

I hope it's ok that I say a prayer for peace and comfort for you and your Grandmother.

[WildClarySage]

14. I'm so sorry hon,

:hug: I lost my Grammy five years ago and I miss her every day. It's awful to watch someone you love move slowly toward that door, and especially hard when you're far away. We were much like you describe with your grandmother- she supported me when I had nothing and nowhere else to go, and saw me through when times were awful. I'd love to have her here to talk with about the things we shared, like books and movies, and to tell her about my hopes and dreams for the baby I'm carrying now. I hope it's a girl who is just like her.

It's the worst pain, to lose someone you love so much, but one day, you may find comfort and peace in having known someone so special, who loved you so much, and you them, that their absence will forever be felt. It's a cliche, but really true, that it's better to have loved and lost than to have never loved and been loved at all.

[progmom]

17. oh sweetie...

I'm sorry. :hug:

[Coventina]

18. My mother died of dementia at age 62.

A very rare form.

Her sickness lasted 10 years. It was a long, hard 10 years for her and for the whole family. I know your pain, and the pain of your family.

:hug:

I wish I had advice or wisdom to give you. All I can offer is a heart similarly wounded and standing with you in sympathy.

:cry:

[CitrusLib]

20. Bertha,

We watched my grandmother battle dementia for 12 years before she passed at age 91. It is a very emotionally draining experience for all involved. I lived far away from my grandmother during her final years and didn't get a chance to see her at the very end. I'm conflicted about that, but I cherish the memories I have of her from when I was little and that's how I prefer to remember her. One day, you will both find peace. I wish you both the best.

:hug:

Citrus

[Beware the Beast Man]

21. ...

:hug:

[bertha katzenengel]

22. thanks everyone

no time to respond individually right now, i'm sorry, but thanks very much.

[jonnyblitz]

23. ..

:hug:

[cssmall]

24. My dearest aunt is passing through the final stages of Alzheimer's Disease

So too acutely can I empathize with your problem. Eight years ago now (where does time go?), I attended my family's reunion and she was up, happy and herself. Barely a year later, she had suffered a stroke and due to medication had early onset Alzheimer's.

It seemed like a year reversed more of her life. Early on, I went from being a teenage nephew to being a child once more with her, she spoke to me of Pooh Bear and of why Reagan was a bad president, but she cursed, something this woman never did.

Another year passed and I was no longer alive, my mother pregnant with me and I an unrecognized friend, my brother the child now. Her own grandchildren were children as well, since I am the "baby" of the family. But, now instead of just seeming to slip away akimbo, she then began to ebb and flow to this point, but slowly the tide drew her back into the 1950s and with it the life of two of her children and the age of my own mother.

She began sleeping more and shaking so much that it became a near impossibility for her to feed herself, but at home she stayed, my Uncle taking the time to feed her every meal and make sure she had all she needed.

But, then over night it seemed that she regressed into the mind of a child, asking for "sugars" and wondering if she was a good girl that she would get candies. And, finally, she began to ebb even further away. She no longer speaks, can no longer motivate on her own, can no longer feed herself, and perhaps is in pain.

I know it is a sad time when my mother says "I hate to say this, son, but it would be better if people would just allow Jesus to let her be whole again." This year for the first time in 57 years, my Uncle send my mother a birthday card that was from him alone. My mother never remembers a time that her brother was not married to this woman and I ask myself daily if my Uncle doesn't remember a time he wasn't married to his wife.

Now, my aunt sleeps nearly twenty three hours a day and doctors are just waiting. The silver lining of it all is: my family has hope that this loving, intelligent woman will soon be whole again in the Great Beyond.


:On Edit: (I forgot to write this because I was crying) So, please, remember she will go to her Jesus, Bertha. I owe you at least words of support for your words when I adopted that sickly kitten, had it not been for you and DU, I suppose that kitten would be dead.

:hug:

:On Second Edit: I butchered my mother's quote as well.

[auntAgonist]

25. No stories, no experience only..

profound sadness for you and your Grandma and the family. Please know that you are in my thoughts and if I could reach you I'd hold you in a long and loving hug.

:hug:

I'm hoping you see her in November.

[no name no slogan]

26. aw, Bertha....

I can truly relate to your story.

My grandmother (who was like a second mother to me) passed away in November of 1996. My grandfather (her husband of 55+ years) is still with us, but has been on a slow, steady decline ever since grandma passed. My mom was a single parent, and my grandparents were a second set of parents to me when I was growing up.

My grandfather made his fortune in the 1950s when he invented a seemless gutter for houses, and patented a special strap he invented. He also built his first car from scratch, in the 1930s, from spare parts he accumulated.

And he never even got through 10th grade, either.

My grandfather is a genius. I've always been very close to him, as we share the same birthday. He used to be able to fix ANYTHING mechanical or electrical. He instilled in me a love of knowledge and a curiousity for how the world works. He bought me my first set of encyclopedias for my 12th birthday. I read them cover to cover as a kid, my thirst for knowledge was so insatiable.

Now, my grandfather can't even work a simple clock radio. He has a hard time dialing a touch-tone phone. He'd been using PCs since the early 90s (when mom got him a PCJunior), but now he's so confused he can't even work a web browser.

It has been very painful to watch this brilliant, intelligent man decline into senility-- a man who designed and built every house he ever lived in as an adult. A man whose intelligence absolutely astonishes me.

I still really love the man he is, but I also miss the man me was.
:cry:

Bless you Bertha for your story. :hug:

[flamingyouth]

27. I am so sorry.

:hug:

[nini]

28. I'm so sorry.. I watched my step mom go through that

It's beyond painful to watch a vibrant, active, wonderful person succumb to that evil disease.

I wish your Grandma a smooth passing and you strength to let her go when the time comes :hug:

[skygazer]

29. I'm so sorry

My favorite aunt has been reduced to this state and it's heartbreaking to see this formerly vital, bright, witty woman reduced to mumbling confusion.

:hug:

[Left_Winger]

31. My most heartfelt sympathies

I experienced this with my maternal grandmother from 1984-1994.

[khashka]

32. I know Bertha

My grandad died last April. He'd been in a nursing home for 4 years with dementia. He didn't know who any of us were or who he was. Towards the end, he didn't know he couldn't walk but he tried. The last few weeks he was literally covered in bruises and stitches. It was heartbreaking.


When he died.... well when he died I was glad. He was a wonderful man and never did anything to deserve that kind of suffering. It really was a release.

I didn't go to the funeral. Haven't been to one since my little sister's. Which made me the bad guy. Oh they were all there at the funeral, all there for the inheritance... but couldn't be bothered to lift a fucking finger when he needed them. No that was left to me and my mom.

I'm a little bitter about it. Obviously.

But I know what you are feeling and how terrible dementia can be. And you have all my sympathy.

Khash.

[bleedingheart]

33. My bro-in-law's mom...

she was a talented artist, seamstress, set designer and all around well rounded person (although her politics were on the opposite side of mine)...

She is now completely "out of it", but because she led a very healthy life....her body is in good shape....so she may live on for a long time like this.

It is cruel and it is heartless....a horrible disease I hope they find a cure for...

[faithnotgreed]

34. beautiful heartwrenching

such love you have bertha

from taking care of animals to your continued rooting for the orioles

prayers and hugs for you and all your family
your grandmother is a special woman

[wellstone dem]

35. I was struck by the love in your post

I miss my grandmother so much.

[hatredisnotavalue]

36. Just a suggestion.

My mother has been in a nursing home for the past year. I looked after in her home for ten years, she lived with me for three years, moved into a senior citizen housing place and then in a month broke her hip and then had a stroke. She probably has been suffering from dementia since my teens. (She is convinced that she is a writer and mortgaged her house to pay for an agent, printing, stamps, etc. She probably at her height was buying $400 worth of stamps a month. Her monthly expenses for her writing career directly equaled her retirement income, so her bills didn't get paid. Anyway, she has no money and a lot of bills.

So..I made a scrapbook for her, trying to detail her life chronologically (sp?) It starts with her baby pics and early life with the dates (years) on each page. The pics and pages go all the way up to 2005.
The nurses told me she gets up every morning and gets that book out first thing to orient herself. When they bring in her breakfast, she knows the date, who the president? is and who her family members are.
It is just a suggestion but it might be something you could do for your nana. It is very theraputic putting it together ( I did it with her grandkids, my kids.)
Anyway just throwing it out there as something to help :)

[Avalux]

37. It's really rough -

my grandfather had dementia. I am sorry you are going through this Bertha. :hug:

[yellowdogintexas]

38. Alzheimer's took my mother in October and my dad's sister in

February. I know the incredible frustration and anger that comes from watching your loved one spiraling down in this horrid disease.

My mom was just cognizant enough to know that everything was totally out of kilter and it made her very angry all the time. Her last 2 years were not pleasant at all.

She died a year ago (almost). I miss her terribly but am so happy she is no longer in this awful state.

my thoughts are with you