Not Sure Where To Post This

[kayc]

Anne,

Thank you for sharing that, I couldn't stop reading and found it much easier to do on the computer with my bad eyesight. I emailed a copy to my siblings that still see my mom, and to my daughter that works with dementia care patients.

This really spoke to me:

Do not ask me to remember.
Don’t try to make me understand.
Let me rest and know you’re with me.
Kiss my cheek and hold my hand.
I’m confused beyond your concept.
I am sad and sick and lost.
All I know is that I need you
To be with me at all cost.
Do not lose your patience with me.
Do not scold or curse or cry.
I can’t help the way I’m acting,
Can’t be different ’though I try.
Just remember that I need you,
That the best of me is gone.
Please don’t fail to stand beside me,
Love me ’til my life is done.

(author unknown)

[enna]

Oh Kay, I am so glad that you and your sisters are reading Coach Broyles book on ALZ. It became my 'bible' when Jim was in later stages. I still pick it up on occasion when I wonder if I was doing everything I could do for my Jim. I was so blessed to belong to an Alzheimer's group right here in the community for over two years. It was too far for some of us to travel to group sessions so a friend and I started a group here just for the caregivers. We had the best facilitators who brought in great speakers and the format was very comforting. After those years I really felt that I was doing the best for Jim. I still look back on those years and think how blessed I was. Perhaps later, I shall go back and join the group (which is still going strong) as a facilitator.

I remember after Jim died that I went back to the group and talked to them about how much the group helped me. It is just so rewarding to feel the love others have for what you are going through. As a caregiver you don't feel so alone when you have someone to turn to. I am always here if you or your sisters have questions or concerns. Love you, Anne

That poem you quoted above is still on my desk under the glass. We would say it often during our sessions since their were new people coming in and out.

[kayc]

All three of us read it in one sitting! We couldn't put it down. I will read and re-read it and have a copy at home and at work.

Here is a link to the free e-Book, you can download in your language. PDF was about 4 mb and Word, about 800 kb but the pdf was far easier on the eyes.

http://www.caregiversunited.com/alzheimers-playbook/read-the-playbook

Note: the "tips and strategies" is no longer available

[mlg]

Dearest Kay,

I haven't been on here for quite sometime but am saddened by your situation with your mom. I haven't read everything but can pretty well figure out the jest of things. In many ways I think Alzheimers is one of the hardest diseases to deal with. The loved one looks so normal but where did they go. I used to tell people it was like their loved one is a turtle. The outside looks fine but when they retract inside what is going on in there. About a month ago I heard another good analogy. Alzheimers is like a big city with all it's lights turned on at night and one by one those lights get turned off until just a few are still on. We never know which one is going to be "on". I hope if there is anything I can do for you that you would let me know.

Mary Linda

[kayc]

Thank you Mary Linda. I took her out last night and it went pretty well. I've come to expect anything and go with the flow pretty much. The book I posted here helped me a lot. I realize it won't be a lot longer and she won't be able to get out, but as long as I can handle it and she enjoys it, I'd like to keep on...it affords us privacy that is in short supply at her facility, and helps her feel less like a prisoner. I dread the day it escalates to Stage 3. Hers is Lewy Bodies Dementia, but very similar.

[kayc]

My mom has gone downhill a lot in the last couple of weeks. She now thinks my dad "was the bad one" and her first husband "was the good one", it hurts to hear that but I know it's her physical condition talking and nothing to do with how she truly felt. She is not herself anymore. She can barely walk, shuffling 1/2" at a time, falling easily, needing help to come to a stand with her walker but refusing help. Forgetting everything, understanding nothing. I asked her if she feels frustrated by it and she said yes...at the lack of words, etc. but not with not remembering people. I had to laugh at that, like people aren't worth remembering! I tell you, Dementia boils everything down to it's most elementary base form...it's amazing what you can live without...even your very brain and memory. My only consolation is that one day her memory will be restored and she will be finally and for the first time, healthy in her mind, as well as getting a new body, whatever form that may be.

I also realize it won't be much longer that I'll be able to take her out, and I enjoy it while I can, first because it allows us some privacy and her some reprieve from "that place". It breaks my heart to take her back there, as she clearly doesn't want to go back. She wants back in her home, which is gone to her forever. I wish she could have died in her home, but some of these things aren't granted to us the way we would like. I'd always hoped that she could just die in her sleep, in her own home. Ahh well, I hope God grants me the grace to accept whatever lies ahead, both for her, and for myself...this experience makes a person keenly aware of the uncertainty of one's own future.

[enna]

My dear Kay. I am so sorry that your Mom has "gone down hill" and that she is having physical difficulty getting around.

I have no wise words for you. I know some of your pain only in a different way with my Jim. I am so sorry that your heart breaks yet again. You are a very brave, dear person, Kay. You have such strength and grace with the way you are dealing with this sadness.

Know that I walk with you and we are all honored that you come here to share with us. Our arms are around you. Anne

[mfh]

Kay, I know, without a doubt that God will grant you and already has granted you the grace to handle what happens next...we all see here how you deal with adversity and you are a role model for me and I would be for others. I am sorry your mom is slipping. I do know that pain having watched Bill slip. Some days it felt like he slipped miles and other days just an inch but always there was a slip...and I know how difficult it is to deal with that. I am glad you are able to take your mom out. Remember that even when you can not take her to a restaurant, you can take her for a ride and get ice cream. I did that a lot with Bill (even in his pj's and slippers). We did the drive thru and sat in the car and got a scoop of frozen custard (a Wisconsin delight since Culver's was founded here and drove the hills a bit. All days drives of early days diminished to 20 minutes before he tired.) And then I took him out to the yard to sit outside on decent days until winter came. So look for those times...and I would think there would be an empty office or visitor room or consult room where you could visit and bring milk shakes or whatever her favorite food is. In the meantime, I hold you in my heart as you walk this painful path. I know it is difficult.

Peace

Mary

[kayc]

The visitors room is full of people that live there, no room for visitors. They sit and stare at the tv or talk to themselves or are lost in their own little world. Her bedroom is small and rather depressing (her choice). She refused the covers, etc. we had brought to make it pretty. I have since learned that this is common...they view everything differently than we do. She shows no interest in going outside, I've tried to get her to. (sigh) But what will be, will be. My mom is not a "think of solutions" person, but rather a naysayer.

[feralfae]

Dear Kay,

I am so sorry for just everything that you have been going through, from Skye, to the flu, to your Mom, your job, and just plain old life, not to mention the accident.

Your plate is full. What amazes me is your fortitude, reasoned responses to all that is happening, and your ability to carry on, understand and accept the situations, and even your poor Mom, and to continue on with such a level-headed and practical response to life. You are one amazing person, Kay.

I visited a place such as you describe, and I was so taken aback that I started crying, then the person I was with (we were there to see her mother) told me that most of the people there, many of whom she had known since childhood, were in this special wing of the retirement center because of dementia or ALZ. They were exactly as you described. When Doug was very sick, he suggested that I put him in a nursing home so I could get on with my life. (as if!) All I could think about were those poor souls who were so lost, that yes, all one could do was perhaps hold their hand, smooth their hair, smile at them.

I have been so blessed with my family, none of whom succumbed to any dementia, and all of whom were totally lucid until their time to go.

You come here and unload everything that you need to at any time, and we will try to hold you and comfort you. I just want your life to be easier and have more joy in it. Even if George not present in person, we all know he is with you in spirit. His comfort can still reach all around you and help you to feel better.

We all love you so much, and you are just a wonderful, loving, and caring person with so much to give. I hope each day gets a little easier for you in some way from now on, and that you find some comfort in Arlie and your wonderful place with the beauty that is all around you.

Much Love,

*<twinkles>*

fae

[kayc]

Oh sweet fae,

I do appreciate your response, more than you know...I need that today. My boss told me yesterday he is thinking of discontinuing medical insurance or perhaps changing to one with a high deductible and we pay half. I am hoping for the latter...something is better than nothing. I'm on so many Rxs and all of them important to the smooth functioning of this shell of a body. Years ago I did my best to alleviate at least some of them to no avail, I can thank my dad for my genes as well as my sense of humor. It is what it is. I am trying hard to not worry and just take the best steps I can to survive. That is all one can do!

My mom's situation is different from most dementia patients in that she had mental illness all of her life, so much so that it made it more difficult to recognize when her dementia started...she was just so dysfunctional and out of it to start with. Because of that, I think her dementia, while I can't call it a blessing exactly, it seems like for her there's been a silver lining...she seems less intense, less worried. For that I am relieved. She could never seem to make sense out of life and now...well she doesn't really need to. Still, I don't want her to feel forgotten or uncared about, and the problem with the memory lapses is she doesn't remember you've come to see her, or sent her a card, or called her. She has no sense of time, she may think it's been years when it's been days. Everything is broken and distorted in her mind. I just wouldn't wish this on anyone!

[Miss Ngu]

Dear Kay - please know that you in my thoughts and prayers. You have been such a great support for me, and to so many others, even during your own challenging times. You are an inspiration. The poem you posted earlier in this thread regarding dementia is a reminder for both my husband and myself to maintain our patience and understanding in regards to his mother who has dementia. Thank you for that. You are a wonderful, powerful, and caring woman, and are truly appreciated. You demonstrate how a human being can behave well, and do their best, regardless of the situation. I admire you -- and feel for you. From my heart to yours.

[kayc]

Thank you so much. All of life is a learning experience and I know of no other way than continuing to put one foot in front of another and one day at a time. My whole life, and esp. these last eight years have taught me that...and now it is a new learning experience as I go through this dementia situation with my mom.

[kayc]

My mom fell eight days ago and pulled her hamstring. Now she's fallen again. I just hate watching her go through this. Shie can't operate a tv, phone, radio, anything. It wasn't so bad when she could walk, she'd walk all day long with her walker, it gave her something to do, people to interact with, but now she just lays in bed staring at the wall or sleeping. This is no way to exist.

[MartyT]

I'm so sorry, Kay ~ for your mom and for you . . .

[feralfae]

Oh, Kay, I am so sorry to hear of this latest news for your Mom.

Can she use a wheelchair? There must be a cart or wheelchair she could use, even if someone would need to push her around in it sometimes.

This is just so sad. Are you the person who lives closest to her who comes to visit her? II am just so sorry, dear heart. You are going through so much and it seems to be all at once for you. I am holding you in my heart, and watching for a present from you *<twinkles>* and thank you.

Is there anything any of us can do to make this easier for you?

Much Love and {{{HUGS}}} and

*<twinkles>*

fae

[enna]

Kay, I am so sorry that your Mom had another fall. Call me if you want to talk. Falling is a common thing with ALZ patients and they have to be watched so very carefully. You are in my heart. Anne

[kayc]

My mom has Lewy Bodies Dementia, not Alzheimer's, although it's very similar. Yes, falls are all too common. She has a wheelchair but still she falls. I just called her facility and asked them to call me and put her through to me, which they did. We only talked a couple of minutes, she seems to not hear well on the phone. It never bothered her before because she did most of the talking, but this time, she didn't say much. She is having a hard time putting two and two together and it breaks my heart to see her slipping away, piece by piece.

I know a lot of you have been caretakers for someone with Alzheimer's...I have for cancer, but not Dementia. I have had close friends with Dementia but they had others taking care of them...this is hitting me hard.

My brother lives in the same town as my mom but with a wife, five kids, and three jobs, he isn't able to visit a lot. I have two sisters that live about 2 1/2 hours from her and they visited her today. I am about 2 hours from her and now that I'm not working, I can only come visit her once every two weeks, especially as winter ensues. I feel bad because I don't know how much longer I'll have her and wish I could be there for her more. I told her I'd come see her in a week. I may even be able to get my other sister to come with me, she hasn't seen or talked to her in years...I think it would be good for both of them. Sometimes there is just a time to let go, to bury the hatchet, so to speak. I respect her decisions and will put it to her and leave it up to her what she decides.

[feralfae]

Dear Kay,

Just {{{hugs}}} to you as you go through this difficult time. Dad was more than 100 miles away and it was winter, and I could only go down outside of my work hours to be with him. And he was lucid. I wish I could have been there more for him. Like Doug, he did let me know before he left, thank goodness.

I know this is terribly hard on you, and also wanting to do some healing. Just remember to be healing yourself as well. You are doing a lot of healing right now and please remember, through everything, to take care of yourself.

Blessings and

*<twinkles>*

fae

[kayc]

Well I just found out my mom has Leukemia. They are trying to change her environment to help with the falls, removed a chair and refrigerator from her room (she didn't understand what it was for anyway), want her to get a smaller wheelchair, NO WALKING, a pad on the floor, and a different "scoop" mattress to help her stay in bed. They aren't going to do anything with the Leukemia as at her age the medicine would be harder on her and I suppose they feel she's going anyway. Lord, if this is what old age is like, I don't want it. My poor mom.

[enna]

Oh Kay, I am so sorry to hear this news about your Mom. I have you, your Mom, and the family in my prayers. ((hugs)) Anne

[srm]

Kay - my thoughts are with you and your family. Sue

[kayc]

Mom fell again and is in the hospital. She was using her walker. Why?! She is supposed to stay off her feet!

[Guest babylady]

so sorry Kay. i don't pray but i'm sending positive thoughts to you and your family. my mom had dementia too. fortunately i had her power of attorney and was able to get her into a safe environment. 3 months later she passed. it was a blessing. she was abusive to me when i was a kid -- hit, scratched, pulled my hair,. etc. actually i think she might have been bi-polar. around the time i met john we finally formed a good relationship until the dementia. she also suffered with depression and in '90 started taking prozac. it really made a difference.

[MartyT]

I'm so sorry, dear Kay . . .