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I am 55 years old and the caregiver to my 81 year old Mother. She had Alaheimer's. My mother was abandoned at the court house last Dec. 21/2006 by my sister. She was 87 lbs and was non responsive to verbal communication. My Sister had been taking care of mom for 2 � years. Day care five days a week and two week vacations every year with short trips throughout. A fight started over money between my brother and my sister. Then adult protection was call in due to my sister tying mom to the bed and then leaving the home. She had lost thirty pounds had a broken hip and was on 500mg of depicote, 10 mg of zyprexa with a little ativan on the side.The court was going to take mom away for her and place her in a Home. My sister who was a nurse was appalled at the thought that they were asking me to step up as guardian. She said very hurtful thing about me in court. The court gave Guardianship to me. I quite my job and now have mom full time no day care. No family support form the siblings there are five of us. My sister the nurse will not even visit her mom. She stated to the court I would kill her mother.She truly hates me for taking mom. She is now off depicote gained 25lbs is on new Alzheimers medication and talking again. It has been a year now she is doing great but I am tired of these four walls. I feel so alone and write poems to relive the pressure. I don�t know why but having her here make me miss my family so much. They do not have much to do with her..they are to busy,mad or to far away.
Mel*in@
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My dear Melinda,
You have found a wonderful, very safe place to express your feelings and share your deepest emotions. I can tell you that I do feel your pain and I do know exactly what you are going through.

I am 55 years old and my mother has Alzheimer's - she is 85. She was diagnosed about 4 years ago. For a year, my two sisters and I cared for her while she lived in assisted living - she had an apartment there, but required no assistance. During that year, she became very depressed and very frightened of what was happening to her. She continues to be very much aware of her memory loss. She asked to move in with me and I took her in and cared for her, while I continued to work full time. I had an aide here during the day helping her, but then when work was over for me, I was with her, tending to her needs and wants. I did this for a year, until I could no longer do it for I had given everything I had emotionally as well as physically. Unfortunately, I had very little support from my two sisters while I was caring for mom. I too have a sister that is an RN and she basically didn't help me at all. She too was very angry that I took my mom in. She wanted to have her in her home, but also wanted my mother to build them a new home and then turn over her monthly income to them. I am my mom's POA and wouldn't allow it. Since then, my sister barely speaks to me (I took my mom in, did not build a new home, and did not take any money from her except to have her pay the aide).

After a year of caring for mom and completely burning out, my other sister stepped in and took mom and mom has been living there for about 16 months. My mom does not know where she lives, no longer knows her grandchildren or great grandchildren and basically has no short term memory and has lost most of her long term memory - she was a holocaust survivor that was in 10 labor camps and now has no recollecton of that time (thank God).

Melinda, it is very important for you to try to care for yourself, to set aside time for you, whether it is to journal, or write poetry, or have a phone conversation with a friend, something just for you.

The Alzheimer's Association has a support hotline 24/7 - you can go to www.alz.org and find the phone number. It helped me many times. They also have group support meetings in their local chapters, if you can get away for a couple of hours.

Melinda, I encourage you to continue posting here. There are many here that understand your feelings and what you are dealing with. Alzheimer's is a horrible disease that in my opinion is actually worse for the children or spouse than the person that has it. To watch as they slowly fade away is just horrible. It is like watching them slowly die.

My thoughts and good wishes are with you. We are here for you, dear angel,
Warmest thoughts and wishes,
Miriam
MIMI427 do you see you Mom now that she is at your sister? My sister does not come see mom any more.She lives 40 min form me. My Brother does not come see her.She had five children and a very hard life. This is worse than divorce at least both parent get visitation. I see into her sad eyes every day. I know alzehimers well and know what i was about to face. But these family issues are just heart breacking. I know what my sister did was wrong and she is letting her pride stand in the way. My mom is the one paying the price.I want so bad to fix this.I write and write of my heartbreak but the pain is there every time mom call her name. She was her baby her last born.I wish ther was one name she could forget and so could I.
Hi Melinda,
Yes, I do see my mom. I pick her up every other Sunday, and she is with my other sister on the Sundays that I don't pick her up and I also pick her up at least one Saturday a month. I take her back to my house, which is about 15 miles away from my sister, so I drive 60 miles by the end of the day, having to go back and forth 4 times. We spend the day together; I take mom for a manicure and pedicure and then back to my house for a while and then my husband and I take her out to dinner. All in all, my sister and brother in law have a good portion of the day to themselves, from noon until 8 or 8:30 at night. My mom doesn't get up until about 11a.

It is becoming increasing more difficult because my mom is becoming more insecure and doesn't really want to leave the house so I have to really push her to get her out. I know there is going to come a time when she just will not leave the house and I've tried to mention that to my sister, but she doesn't want to hear it. It's funny that you should ask me if I spend time with my mom. I've been wanting to post this, but I was really a little afraid of how people here would react, because I do understand what all of you are going through because I went through it; certainly not for as long as a lot of you, but unfortunately, I had health issues that forced me to make changes. In any case, I have faithfully been picking up my mom every other Sunday, and some Saturdays since my mom moved into my sister's home 16 months ago. Last week, we had an ice storm on Saturday night. Sunday morning, it was raining rather hard and the weathermen were predicting that the rain was going to turn to sleet and then snow and the roads were going to be really hazardous. I called my sister in the morning and told her I did not want to be driving 60 miles in that kind of weather and didn't think my mom should be running around in that kind of weather, but I did offer to go to her house and spend the day with my mom there, so she and her husband could still have time to themselves. At first she said okay, then she called me back a half hour later and said let's just forget about today. I said are you sure? And she said yes and I haven't heard from her since. I really think she's upset with me, but I feel that I didn't do anything wrong. I would like to hear from those of you that are caring full time what your thoughts are.
Thanks,
Miriam
MIMI When my sister was taking care of Mom for the first two years I did not visit much I worked full time as a designer at a furniture store. A designer at a furniture store is just a glorified sales person. No Saturdays or Sundays off. It was a hard completive job all about the numbers not the design. Not to make excuses but she did day care mom every day and did not have a job out side the home. She did have a young son about 10 and my brother would take mom for short trip for then through out the year. I would take mom on my two week vacation time and let them have a nice long summer vacation. All the fighting started after my sister fell with mom and she broke her hip. She was in bed most of the day and she could not day care her. My sister is very paranoid and did not want strangers in her home. That is why she tied my mom to the bed drugged her up and took her son to school and ran errands. Before I got my design degree spent 10 years working in long term care as an activity director. When my sister took my mom in to live with her she was walking talking and weight was good .She was bathing herself and feeding herself and totally continent. Yes she did have early signs of Alzheimer�s and needed to have some assistance. My sister had bought of anorexia when she was young and I thought even though she is small that she had it under control. You can not expect some one who can not feed themselves to feed another. My mom weight began to drop and drop. My sister was mom�s favorite and she had made her and my brother in charge of her money and her care. My hands were tied I felt helpless. My mom has always had a fear of nursing homes. She called them poor houses for people that did not have families to care for them. She did not like me working in one and she took care of her mother with Alzheimer�s until she died at 91. She had stated over and over again that she raised five children on her own and the least they could do is care for her until the end. When she would come to my house on the farm over the summer she would ask to live with me. I told her there was nothing I could do my sister would not let her come. Day care for my mom was not a good thing. She did not eat there and did not get fed enough at home. She began to put up a fight about going to day care. My sister told her if she did not day care she was going to a nursing home. My sister had her admitted to a psychiatric ward at the hospital for what she called medication adjustment. They put her on 500 mg daily of depicoate then the second time she had her admitted for medication adjustment they started her on zyprexa with a little ativan on the side. No Alzheimer�s med just behavior control. The medications took their toll and the side effects started the shuffling of the feet and loss of balance the loss of appetite. She became this little doped up Schell of a person. The talking stopped then the fall that broke her hip. There was nothing behind her eyes any more. We gave my sister $60.000. For four years of care in advance to get that new home. We paid her a monthly fee for her care. After she and mom fell and mom broke her hip hospice was call in mom was now 87 lbs all this in two and � years of my sister care the RN. My sister wanted to be paid more for skilled care she was giving mom. The fight over money started and she was reported to hospice for leaving mom home alone while drugged and tied to the bed, by my brother. My brother who lives only minutes for my sister was POA. She took him to court and when the court took mom away for her they made me appointed guardian by all court. My sister and my brother have walked away. Why did the doctors and my sister do this to her. When she came to live with me I took her off the depicaote the withdrawal was hard. I tried to take her off the zyprexa but the withdrawal was too great on her. The new Dr. started her on the new Alzheimer�s medication and she is walking and talking again. The mental loss was great however and now the words no longer make any since but she does talk. She now weighs 125. She has been in great health for over a year. But for what no one want to see her or visit her. Was my work for naught? I have opened the door to my Sister and my brother to visit but no one knocks. My brother knows how I am tortured by all this and asked me can I not find happiness. Can I not be thankful so I wrote this to him? He does not like me writing on my space in my poems. I wonder why

My stories My twine

You ask me, can I not find happiness.
You ask me, can I not be thankful.
You asked me to be the one, when you could not
Somehow did you think I was about to play?
A game of just sitting around, having fun all day?

This is a sacrifice to do what I do
A deed of love, how can this be news?
The job is call caregiver, I hold it well
I treasure the moments we have, trying not to dwell
On the past that I�ve lost and the happiness it held


I know you say you appreciate the work that I do
Yet how could you not understand the pain I go through
I face my mothers face every hour of every day
I see her pain, her fear, her heart ache, this does not go away
She sees mine, I am tired, I am lonely, and I have a hard time with the pace.

There are times I just can not hold it in.
I want to run to the hills and shout to the sky
I want to be free, but then I look into her eyes
I am lost to this job; I have no time to spend
I feel all alone, do you not understand why?

What choice do I have but to give and to give?
No one to help we all have a full plate
So face her disease with a curse and some hate
No more my mom or how she would live
She has suffered so much, so why this miserable state?

Where is her God to open his door?
She loved him so, I cry never more
You are my sibling yet, you do not know why
The reason for that is you have closed eyes.
You guard yourself well my sibling dear

You have nothing to loose, nothing but fear
Your heart is a gift, your love is assured
To know why, you do what you do, and give what you give
Is something you won�t fine living so close to the line.
My line is not tethered, my stories, my twine

By Melinda Horvath 12/13/2006
MIMI P.S .My sister did visit mom twice that first year. But when I asked her to pay back the 11/ 2 year advance still left on her contract that was the end of her. My moms estate was not great just a little money for the sell of her home. Now that she has a healthy body she could live in endstage Alzheimer�s until she is 100. The mind goes but the body just keeps on going and going.
Mimi
Sorry I did not address this in my other replies. I think it is great you are able to see you Mom on Sundays do not guilty when you can not be there. Your sister is now her care giver and you are her relief caregiver. We all have times we have to cancel and it will always be a disappointment to those wanting relief. Just reassure her that you will be there next Sunday if the lords willing and weather are good.
Now Let us talk about your Mother not wanting to go out for the day. My mother did not want to go out at all not even to the store. We had a long talk about it and I asked her is this really what she wanted never to see the tulip or the roses again. Do you really never to feel the wind on her face and the sun in her eyes? Remember I was an activity director LOL for 10 years. That was my job to get them going up and out. Mom can not find the words but she often understands what is being said to her. I told her if someone came up to her and she did not know who they were. If she could not remember their names. She could just call them sweetheart and that would be a nice way to address them. When they start to forget they know they are forgetting and it is frightening. We practiced saying Hi sweetheart and how are you. She can still say that great. I also made her memory tapes of words she could use like I am thirsty, I need to go to the bathroom, and I love you. I play them at night when she goes to sleep. She can still say most of them. Talk to her about her fears and help her deal with them. She has Alzheimer�s but she is one hard working woman. Do not let her last days be shrouded by fear her time with you is most likely her one day out not looking at the four wall. Mom and I are looking for a handicapped van to make thing easier on us both for this summer. We want to go to the zoo and maybe a few short trips now and then. She now just sings and sings when we go out. Life can be good for them they just need your hand to hold and know it will be ok. Mom is sleeping late but must go get her up now have a great sunday with yours
MiMi--What you are doing is wonderful! I'd give anything to have someone who could spell me occasionally. I have a younger brother only 30 miles away. He never offers to take her for even a day and when mom wants to see him I have to get her there. He'll come for Thanksgiving and Christmas, but I have to host it. I have to be honest and say there are personal issues between them that make it difficult, but I'm not hoping for once a week, or once a month. Once every few months would be heaven. And they wouldn't have to keep her all day. If they'd just come and get her and take her out to dinner or to their house for a while and give me a few hours alone, I'd be eternally grateful to them. You are providing a wonderful gift, I hope they appreciate you! Donna
Dear Donna and Melinda,
Thank you for your responses and support. Obviously, my sister doesn't appreciate me and in fact, she feels I don't do enough, or she wouldn't be upset that I wouldn't take my mom out last week. Even with the weather being so bad, I still offered to go to her house and spend the day with my mom so she and her husband could get away for the day, but apparently, that wasn't good enough. I know my sister is going through her own emotional upheaval. As I mentioned, I've been there, done that. And even though it was only for a year in my home, in actuality, I have been taking care of my mom my entire life. My paretns were holocaust survivors. That horrendous experience impacted both of them in very different ways. My dad came out of that embracing life with a heart full of love, kindness and compassion. My mother came out of it an empty shell, with no compassion, empathy, nurturing or love. Her expectations of me and my sisters were impossible. She wanted nothing less than for us to live our lives catering to her needs. I know I must sound harsh, but finally, at the age of 55, I am beginning to understand what I am about and why I am going through what I am now going through mentally as well as physically. I have never in my life put myself first and if I even thought about it, I would struggle with enormous guilt. Even to this day, as much as my mom's mind is gone, she still continues to try to manipulate me with guilt. Those buttons that she implanted in me years ago are still there and she still knows how to push them. Through therapy, self discovery and journaling, I am beginning to understand and work on bringing myself to a point of health.

I know my sister needs help with my mom. I understand what it's like to feel as if you have no one to turn to or ask for help - I lived that for an entire year and that is the last thing I want to do to my sister, but I also know that at age 55, I must begin to heal myself or I will never be healthy and this cycle of illness will continue. For the past year, I have been diagnosed with one illness right after the other and just when I think I've overcome one, something else pops up and everything is tied to my immunity system including coronary artery disease. Mind you, I am NOT blaming my mother for anything. I have forgiven her a long time ago and that was a huge step for me because any time I had the slightest thought that blamed her for what I was feeling, my next immediate thought would be "but she couldn't help it because of what she went through." I still firmly believe that, but I also believe that I deserve to be healthy and happy and to put myself first and that is not selfish. I continue to work on this, this is my journey now and I will continue to try to help my sister and spend time with my mother as much as I can. I do work full time, six days a week, so Sundays are really the only day I have, yet I spend every other one with mom.

If there is one thing I would like to share with the caregivers at this site, it is this. It is NOT selfish to put your emotional and physical needs first. I know that some of you simply don't have the resources, financially or people, to get "time off" but that is what you need to work on, to do for yourself. There are organizations that you can research online that will help you, either through online support groups, or volunteers. One that Glenda has mentioned frequently is Volunteers in Action (I'm not sure if that is the right title, but you can go back on this site and read some of her postings). I cannot stress enough how important it is for you to care for you. Some of us didn't take heed to that warning, and we are now paying the price.

Sadly, neither of my sisters understand what I am trying to do now for me, so I have lost my relationship with them, and that does make me very, very sad. My sisters were also my best friends...

I wish you peace and happiness,
Warm wishes,
Miriam
I seem to be hitting all the topics today, but all of them are so close to me I can't seem to help myself. I guess it's a day for tears and working through pain.

I understand how it is with siblings. The brother I grew up with is now 57 and lives with his 2nd wife in NY. His first wife died of a rare form of ovarian cancer when she was only 44. She was his life, his stability, his sanity. He had the help of hospice and was very happy to hear that I had turned to hospice to help me with my mom. But, there is no help from him. He never calls, but as I have said in other posts, we suffered alot of pain when we were growing up. He's pretty much washed his hands of Mom as well as me.

I only met my other, older brother 4 years ago. When my mom was very young, she ended up turning custody of her 2 sons over to her husband. Life was very hard for young women with children in those days. It's not much better now. Anyway, I guess he had searched for us (especially me) for over 20 years. At one point he thought I was dead. He came to visit 4 years ago, and I knew the moment he held me, I was in the safe, loving arms of a brother. He didn't have an attachment to Mom. He had grown up having it pretty hard himself. My oldest brother died of cancer several years prior to Carl's visit.

Carl and his lovely wife came to see us for just a day about 2 1/2 weeks ago. That's when I hit the emotional skids with Mom. That's when she stated she didn't want to live to be 90 and be like she is now. Carl also lives clear across the country from me. I would ask anymore from him that his emotional support. He does not owe my mother or me anything. So, I do know what it's like to have siblings who will not or cannot or cannot be expected to help.

So, I work all day and go home to Mom. I'm usually tired, cranky, and just plain whooped.

But, Mimi, Miriam, Donna, and Melinda, you are all so wonderful. When I read of your lives and your pain, my seem very small indeed. God bless all of you.

Mimi, you were absolutely right in your decision. Not only was your mom's safety at risk, so was yours. Good decision, and please don't beat yourself up. You're a good woman.

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