mom has Alzheimers - Mothering Forums

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Old 03-10-2005, 01:59 PM - Thread Starter
 
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I haven't been to this forum in awhile, probably since just after she was diagnosed a couple of years ago. We have all coped pretty well but this week I am feeling the grief big time. I was told earlier in the week that it is time to place her in a locked unit of a nursing home. She may still live for years but she has deteriorated so quickly and it is hard to watch. She didn't want this. Alzheimers was her worst nightmare and I am watching it play out. She isn't so troubled by it as she was in the early stages - she thinks she is fine now but she has lost so many abilities and so clearly an Alzheimers patient and so difficult to be with.

I am tired. I have no siblings and my father died years ago so I am handling this alone.
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Old 03-10-2005, 02:27 PM
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I am sorry I have no personal experience to offer, but I didn't want to ignore your post because it is clear this is very upsetting to you (naturally) and I just wanted you to know someone is listening.

This disease is among the worst (I have heard) in terms of grief, suffering, the impact on the patient and family etc....because it is like someone virtually dying who is still alive...losing the person they were and so on...

I am so very sorry for you at this time...I am sorry you feel you have no one and the only thing I can suggest is to keep posting here and maybe look into a support group in your area, as I am sure that there is one...since this is such an upsetting disease for all involved and seems to affect so many older people.

I am so sorry, I will say a prayer for you and your family...
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Old 03-10-2005, 03:06 PM
 
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What a difficult transition time this is for you...I have a friend who is currently struggling with trying to keep mom at home; she has up to now patched together some help while she's at home and a good adult day care while she's at work. I am walking her through this, since she knows that I've been there.

I'm lucky, I shared the burden with lots of sibs and my mom. But it was heart-wrenching for all of us when Mom finally decided that she couldn't do it any more last summer. Some of my sibs stood against her (but were not exactly bashing her door down to move in and take over his care).

But we finally placed my dad last August; he unexpectedly died at the end of September. Even after living with the disease 8 years, we were still surprised by how quickly he began to lose functions...he entered the home still eating table food (we had to feed him), but by 9/10 or so, he was only eating pureed stuff. He walked in, but was soon chair-ridden. I am not saying the nursing home did this to him; they were loving and attentive, and one of us was almost always with him. He was just done.

Early in his diagnosis, I went with my mom to some support group meetings of the Alzheimer's association; they really helped. Can you get some support? Do you have a place you are willing to place your mom?

Just wanted to say btdt and to offer a listening ear. I still miss him, not just the physical presence he was in the nursing home, but the daddy who helped me ride the waves and taught me to read...
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Old 03-10-2005, 03:12 PM
 
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I am so sorry for you and your Mama My father died from complications of alzheimer's almost 5 years ago. I don't know you but I wanted lend another ear and let you know someone cares.

Please make sure you take care of yourself, also. There are many Alzheimer's and support for caregivers organizations out there. You can contact the http://www.alz.org/ to find a support group near you. You may be too tired to get involved in a group, but many of these groups have relief care. Someone will come out and help you with your mother for a few hours or help you around the house, cook a meal, etc. Maybe you have already been made aware of these organizations, just thought I would mention them in case you have not.

If you need to have someone just listen to you, please feel free to pm me. Take care and my thoughts are with you, dear.
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Old 03-10-2005, 04:47 PM - Thread Starter
 
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Thanks for your replies. Before having children of my own I spent many years caring for people with disabilities and also some people with Alzheimers. Because if my work experience, I found early on with my mom that when I went to the support groups I often had more to give than I received. that was okay to a certain extent, but I don't go any longer - it just isn't the time for me to support others in that way. I find a lot of caregivers need support around the things that come naturally to me, like how to communicate with and physically care for someone with dementia. I need support at a different level, and I don't think I will find it there. My mother wasn't ever really a "mama" - unfortunately she was an abusive parent and had some serious mental health issues before the dementia surfaced. That just complicates the grief and caregiving process. I have a wonderful husband, a good therapist and some good friends, so my sense of isolation comes with the deision making and having ultimate responsibility for another person's life.

My mother is currently in a retirement home but clearly not receiving the kind of care and supervision she needs. I am glad that there are now other caregivers helping, but they are not trained or set up in a way to care for someone with her degree of dementia. Moving her into a nursing home will be the sixth move I have orchestrated (between her moves and those of my own family) in less than four years. I know that she will fight this move tooth and nail once she realizes what is happening and I dread that. How have otehr people coped with placing a family member in long term care against their will?
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Old 03-11-2005, 01:13 AM
 
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I am so sorry for you and your family. My grandmother died from Alzheimers when I was younger, it was very hard. She lived on her own until it was just no longer safe, my father wanted to put her in a home but my mother refused to allow it and even though they were divorced she took upon herself the awsome responsibility of caring for her mother-in-law until her death. It was hard then and I truly wish I had been more mature and been more of a help to my mother during those years, only now do I realize what she put herself through. The only comfort I can give you is that no matter what the rest of us were going through watching her slowly die, she died very happy. I know it sounds strange but in her last years my grandfather was alive to her, she was young and courting again or my own father was a toddler. In a strange sort of way she got to be able to relive her most treasured memories, and be with my grandfather again. She even once talked about my own birth, it was nice to be able to hear that. It was a great comfort to us all that at least while her body was dying her mind was able grant her joy during those days. I hope this helps you some.

Jennifer

Super Crunchy natural birthing, extended breastfeeding, non-Circing, non vaxxing cloth diapering, Student midwife and Mama to Hannah 14 Abby 9 and Liam 1
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Old 03-11-2005, 01:30 AM
 
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Sending you love Mama.
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Old 03-11-2005, 11:53 AM - Thread Starter
 
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Thanks
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Old 03-12-2005, 02:37 PM
 
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wow...nothing like going to your first support group meeting and being like the "leader"; in LLL, it's normal to do the support of other people AFTER you've gotten it...

I'm sorry that in my experience, my dad lost language very early in his illness, and so though he might have been sad and frustrated in care, he didn't tell us/fight us. But he was a gentle guy; handed over the car keys with relief when the time came...
Unfortunately, from my dh's work with this population (he's an RN who was head nurse on the dementia unit for some years), I know that there are LOTS of families out there struggling like you, with demented parents who perhaps have a dual diagnosis, long-term history of mental or emotional problems...and more unfortunately, lots of them are in denial, so it's hard to talk and share with them, 'cause it's too hard to say the truth for some people, kwim?

Do you have some ideas of facilities that you are interested in? Could you find a good social worker in one of them to give you real ideas--I know too that like with anything, nursing home social workers are a mixed bag, but a good one COULD be that source of support.



Anyway, just wanted to note my pride in your decency and concern...it's a hard row to hoe.
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Old 03-13-2005, 10:55 AM
 
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Shantimama, I'm so sorry your going through this. I really don't have any answers for you - but you have my support

My Nana had Alzheimers, but she never lived long enough for it to progress very far. My nana had lung and brain cancer which progressed very quickly. She fought us tooth and nail when we tried to get live-in care and then nursing home care. It was horrid. Nana was a very proud woman and kept trying to vaccume and clean her house.

Actually the Alzheimers was a saving grace in our situation. She forgot that she smoked, so it was easy for her to kick the habbit when she got to the point of needing oxygen and it took some of her fight away toward the end.

However, her case was odd. I know that Alzheimers causes extreme irritability and bursts of anger. When our family looked back, we wonder if she had it for over 10 years and her angry attitude hid the signs from us.

It's a horrid desease because there is nothing you can do and slowly, you lose the person emotionaly.

I think of you going through this alone - many hugs to you mamma Follow your heart as you make decisions and know that your mother will adjust.
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Old 04-06-2005, 04:12 PM - Thread Starter
 
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She moved into the secure unit of a nursing home this week, and she is livid with me for "doing this to her." She feels like nothing is wrong with her and really doesn't see or understand any more how affected she is by Alzheimers. She is only allowed to have a limited number of possessions with her (on an Alzheimers unit, things go "missing" all of the time) so she feels, understandably, like everything has been taken from her and she has been left with a bunch of people she doesn't belong with. She is so angry, in between hallucinations. I am so tired and so sad. I know this stage will pass, but it is so hurtful.
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Old 04-06-2005, 05:46 PM
 
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God bless you shantimama, praying you will get the support you need to make it through this. Do something nice for yourself this week like take an afternoon to do nothing but read trashy novels (or whatever you like to read), get a massage, or have your hair done. You deserve it.
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Old 04-07-2005, 10:58 AM
 
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shantimama: blessings on you during this rough transition.

two "affirmations, or really just things to say to keep you whole these next few weeks: YOU aren't doing "this" to her; Alzheimer's is. She lacks the insight to see that you are protecting her and maximizing the potential of the time she has left. "Things" may "go missing" on PCUs (protective care units); people go missing outside them. Philadelphia suffered last winter with a family whose dad went for his usual short stroll and didn't make it home; he was close to home but wandered into a wooded area and died. Not the way his daughters wanted the sweet man their dad to pass, alone and frightened.

"People" will question you; my older sister tells everyone the story that my dad read his name on his nursing home room door and became sad, lost his will to live. I've listened to that story so many times, with the implied statement that my mom and I conspired to do away with him, and have questioned myself. Maybe we COULD have worked something out to keep him home a littlelonger.... Then one day it came to me; my dad was in his 9th year with the disease; HE COULDN'T READ!! So...that story somehow comforts my sister...whatever. I know it was the right thing to do. He was becoming agitated and HAD hurt my mom...

I second the suggestion to do something for you...
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Old 04-07-2005, 06:35 PM - Thread Starter
 
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Thank you. One of the heard parts with Alzheimers is losing much of the person, no matter how good or hard the relationship, before they die. My mother thinks she is the same as she always was, but she isn't. Saying good-bye in so many ways, so often is hard.
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