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mottm

Ending the caregiver role

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I read this site from time to time, post when I can, and learn a lot of things from people. Mostly lurking, I found this is a great site, but a common thread I have found is, is that some of you have have been caregivers for years with no end in site. I guess I am looking for affirmation that some are not meant for this role, and that trying to get out of the caregiver role is full of guilt, angst, anger and confusion.

 

I have decided as an only child to a stroke patient whose recovery is at a standstill, that I have to make changes both for my sake and her sake. Mom was doomed from the start because of her aneurism 18 years ago, and she could not receive clot busting drugs when the stroke hit. I had psych evals done in December for her and they said this is as good as she is going to get and will need 24/7 care for safetys sake. This news was devastating and a relief. This gave me the nudge I needed to make a move for her that suits her needs and frees me to work and have peace of mind she is being taken care of.

 

But why do I feel so shitty about this?! I am soon to be divorced, I have no children, I have a job that is going to require travel, a home that needs work and her home that needs fixing up to sell so she can have more money to stay in this assisted living home. I have done this for 7 months, mostly alone with help from 2 other people. I have stayed home from work almost 2 days a week and tried to work from home without compromising my job.

 

I am tired of washing bedding and clothes each day

I am tired of fighting to do therapy

I am tired of showering a fragile body

I am tired of wiping a messy butt

I am tired of saying swallow the pills don't chew them

I am tired of cooking all 3 meals a day

I am tired of the "WHY?" and the "HOW COME?"

I am tired of the "gosh darn dag blamit you, you son of a bitch" when I try to help

 

I know she suffers from a stroke and lack of mental capacity, but she is starting to isolate herself in her own home. She wont go out anymore, she wont do anything anymore and not one of her many friends has offered to help in the last 7 months.

 

So I january 30th my caregiver role ends, but I feel like I have given up. Like I should try to do it longer, but I just cant. When I read posts here I cant believe that some of you will and have done this for years. I need affirmation that the caregiver role is not for everyone, and that I at least tried it, mostly alone, and that my decision is a good thing.

 

So this post is for the former caregiver, the one who broke away, the one who tried and said I cant do this anymore. How did you move on and get over the pain of letting go.

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Dear mottm,

 

I am not a "former caregiver" in the sense you've posted. My husband is home and I'm his 24/7 caregiver.

 

Right now you are feeling as though you are abandoning your mother, but really you are moving into another phase of caregiving. You are relinquishing your hands on duties and replacing those duties with the responsibility of overseeing the day to day caregiving. Your role as caregiver may be changing, however, your role as son isn't.

 

We all go through phases, and I know some are more challenging than others. It's ok - you know in your heart the care you have for your mom and you know the care she needs. You aren't shirking your responsibility - you are fulfilling it.

 

Best of luck to you,

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Mottm,

 

I can not reply to your post as a caregiver s I am a survivor. I agree with Annie, your role is changing. We can all advise you to not feel gulty; however, that is easier said than done. You sound like an organized person; as long as you have "plans" for Mom's care and follow through on what needs to be done, you're on the right track. My life too will have to undergo some "substantial" changes in the next 3 years. My daughter -high school student/caregiver wil be gradusting high school and going to college. I hope that my recovery will continue so I am even more independent than I am now. Good luck to you - please keep us updated.

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I agree too. I did care for my Mum and in the end had to put her in a Dementia Lodge. I was also caring for Ray who was in recovery from another stroke (number four)at the time but I still feel as if it was an "either Ray or Mum" choice that was forced upon me by circumstances.

 

There is a time to end the caring role and we will all get there. Ray has had a fall and is in hospital at the moment, hopefully the fracture will start to mend, the pain will lessen and he will walk again. If NOT then I have to make some new decisions too.

 

We all do the best we can, we all mourn for our old life, we all despise those who should help but don't. That is what is so good about the forums here, we are all part of the isolating world of stroke. We all have some of the same feelings. We are all here to support each other. It is a nurturing experience. It is like walking into a home with a warming fire, with the soup in a pot sending out delicious smells and the friendly faces saying:"Welcome, come on in."

 

Try not to feel guilty, just think:"I did my best, now there is a better way to take care of her."

 

Good luck with the job, the house clean up etc, you still have a long job ahead of you.

 

Sue.

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I can not reply to your post as a caregiver s I am a survivor. I agree with Annie, your role is changing. We can all advise you to not feel gulty; however, that is easier said than done. You sound like an organized person; as long as you have "plans" for Mom's care and follow through on what needs to be done, you're on the right track. My life too will have to undergo some "substantial" changes in the next 3 years. My daughter -high school student/caregiver wil be gradusting high school and going to college. I hope that my recovery will continue so I am even more independent than I am now. Good luck to you - please keep us updated.

 

 

The fact that you can get on a computer and even think clearly enough to put thoughts into words tells me so much. I dont want that to sound wrong, but my mother cannot even tell its a new year, no matter how many times I have told her. She forgets 5 minutes later what she was told. She appears to have permanent aphasia, she wants nothing to do with therapy anymore and does nothing but watch TV all day and night. I have become an in home sitter, and I am here 98% of my time.

 

She is not going to get better, and I cant continue to do this for her.

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Mottm,

 

Before my husband's stroke, I share-cared my dad for five years who had dementia. If he hadn't gotten lung cancer in the last seven months I know our family would have had to make the decision you and others here have had to do. Everyone has their limitations. Custodial care is not the same as caring for a parent who is actively participating in a recovery process.

 

Making the transition from a hands-on caregiver to over-seeing institutional caregiving is never an easy one. Family members rarely all agree on when the timing is right and that causes a lot of stress. What you have to remember is that 98% of your mom's care has fallen on your shoulders so it's YOUR opinion on the timing that matters the most here. So don't buy into the guilt trips that yourself or anyone else is trying to lay on you. As Ann pointed out, you're not going to be abandoning your mom. You'll still need to visit on a regular basis to over-see her care and make your presence known so that she isn't neglected in any way.

 

Some people actually do better in a place where they are around others their own age and with a level of activity that your mom may be able to enjoy. This move might actually turn out better for her as well as other family members. Keep us updated, okay?

 

Jean

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We are all here to support each other. It is a nurturing experience. It is like walking into a home with a warming fire, with the soup in a pot sending out delicious smells and the friendly faces saying:"Welcome, come on in."

 

I am one of the "lucky" ones as I can utilize the computer and be somewhat independent. I wish the best for you as you work towards getting your Mom situated. Hopefully, she'll be around others in her age group and become inspired to work on her recovery. I think my motivation came from having a teenage daughter and being a single parent.

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HELLO MOTTM,

 

MY HUSBAND AND I ARE CARETAKERS TO OUR 23 YEAR OLD DAUGHTER. RACHEL HAD A MASSIVE STROKE 2/17/06. WE WILL BE CELEBRATING HER 1 YEAR POST-STROKE ANNIVERSARY NEXT MONTH.

WE LOVE RACHEL DEEPLY, BUT IT IS PHYSICALLY AND EMOTIONALLY DRAINING AT TIMES. I UNDERSTAND COMPLETELY WHERE YOU'RE COMING FROM.

 

RACHEL HAS MADE GOOD PROGRESS, BUT HER ROAD TO RECOVERY IS A VERY LONG ONE. WE HAVE HAD OUR FAIR SHARE OF GOOD AND BAD DAYS, AS I'M SURE YOU HAVE HAD ALSO. AS HUMANS, WE DO THE BEST THAT WE CAN. IT IS AN EMOTIONAL ROLLERCOASTER.

 

YOU CAN'T BEAT YOURSELF UP ABOUT THIS. LOOK AT WHAT YOU'VE DONE ALREADY. I AGREE WITH WHAT JEAN SAID-"SOMETIMES OTHER FACILITIES THAT HAVE PEOPLE IN THEM THAT HAVE GONE THROUGH THE SAME ILLNESSES, ARE THE BEST PLACE TO BE.

 

YOU CAN STILL BE VERY ACTIVE IN YOUR MOTHERS CARE WITHOUT BEING THE "SOLE CARETAKER". GOOD LUCK TO YOU AND YOUR MOTHER. I WILL KEEP YOU IN MY PRAYERS.

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Guest yin

Hello Mott,

I'm a survivor who is with another survivor, so we caregive one another. But my level of caregiving can be likened to wading in the ocean up to my ankles, I'm not in the deep waters as you are.

It would seem to me that you are agonizing over this decsion and really only you know when it is time to end being your moms sole caregiver. I think it is normal for every child of an elderly parent to feel guilt over the decsion of when it is time to find other alternative choices on what to do with a sick elderly parent. You tried it, you did it alone, so ease up on yourself that you are only human and no, I don't think everyone is cut out to be a caregiver.

You say you are going threw a divorce right now. I would think between the emotional trauma of a divorce and trying to take care of an elderly mom, your plate is full right now. Pass on the guilt of putting her in assisted living. You need to think of yourself and ultimately you can't have your life on hold while you take care of your mom. Those kind of sacrifices are not something everyone is willing to do and lets be honest and call them a burden that not everyone is capable of doing. Would it help your mom if you built up resentment over time towards her if you kept trying to take care of her by yourself? I think you are trying to find a solution that will help you both and you don't need guilt added to it.

I wish you luck in finding your solutions,

Yin

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I agree with all the others. This may be a really GOOD move for her.

 

A friend was "power of attorney" for her neighbor. He fell and could no longer live independently. She found a very nice assisted care home. He was a little apprehensive at first. He moved in and found an old friend and is happy as can be.

 

You have done your best at hands on caregiving.. you are not giving up the caregiver roll.. think of it as delegating daily duties to people who do this every day... just like on a job.. it takes a team.

 

Good luck and keep in touch with us, Bonnie

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Hello all!

 

Thanks for the responses. I feel like I forget to come back here and check for responses, and I have. I saw mom doing things that make no sense recently and i realized she cannot be alone any longer. Not that she was alone, but even for 15 minutes she can create havoc. It was then I realized this will be good for her. She will no longer sit on the couch all day with no interaction from people. She will be forced in a way to interact and I hope get better.

 

Dr's. now say she needs 27/7 supervision and i feel safe knowing this place will do that.

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I am glad you've found a place for Mom to be taken care of. Best of Luck.

 

 

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Glad to hear you have found a good place for your mom, est wishes to you both

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Mott, so happy that you are at peace with your decision concerning your Mom. Try to take some time for yourself and your own "healing", you deserve it.

Kristina

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I can so Totally relate to Caregiver Burnout. My husband has been home since 11/16/06 and I am primary caregiver 24/7. I finally had to hire someone 3 days a week to come and help me out. I take care of my husband AND I work full time at home so I feel isolated a lot. I get so tired of changing the beds, wiping the bottom, making all the meals, doing the laundry, cleaning the house, working a full time job. He has Aphasia too and cannot walk, is confined to a wheelchair. IT is a tough life and I am aging before my very eyes. He is now going to Outpatient rehab therapy and I have to juggle that along with my job. I have had to schedule "vacation" time to take him to some of the therapies. My caregiver will be able to help some there. She has been great and helps with the housework and taking care of George. But it is still a 24/7 job for me. And it is expensive to hire a caregiver but it is worth it to give me a little time AWAY from the house. I don't know if my husband will ever walk, or go to the bathroom on his own so I am probably looking at a lifetime of doing the constant care. I am 56 and he is 63 so neither of us are spring chickens and I feel myself getting older all the time.

 

My daughter (who is my husband's stepdaughter) doesn't see why I don't have him go to a nursing home but I love him and enjoy having him around. His daughters don't come around much, one doesn't come around at all. We live lin a town away from any family so I am doing it on my own. There are days I just sit and cry and then there are days that I feel real joy. I have no idea of the future and I try to live one day at a time because if I look forward it can be overwhelming. Caregiving is the hardest job I have ever done and I can understand why someone would want to quit the job of caregiving. I am still trying to get organized ( HA HA) my home office is a mess and I had to learn how to take over all of the bill paying, decision making because my husband's Aphasia is pretty bad. He can talk some but a lot of the time it is just garbled. He does ok in therapy but when I want him to do things at home he can be resistant. It is hard to see him have Aphasia because he is a retired banker, so he is smart and took care of all of the business stuff before his stroke. Now somedays I just get so overwhelmed just paying the bills. My venting isn't because I don't care about my husband, I love him with all my heart, it is just that I am so tired all of the time and my life is so confining. We used to take nice vacations, go out to dinner with friends etc and now we can't do any of that yet. He likes to go for drives so we get out at least once on the weekend. I miss the conversations too and what companionship comes with just plain talking.

WE have only been married for 7 years and those 7 years have been the happiest of my life so I am grateful for that. He is kind too, never gets mad and has a sweet disposition so it makes it easier. So I feel blessed in a way that I have been "chosen" to be the one to take care of him.

Caregiving is a challenge but it has it's benefits too. I would tell any caregiver to not feel guilty when the time comes to leave the job and make decisions that we may all have to make some day.

God Bless you.

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Mottm,

 

Thanks for starting this topic. I just now happened upon it.

 

I am an only child who has given up the past 2 years of my life to live at home with my parents. My husband is here with me, but we both miss our life in Montana. It is quite a distance from New Jersey, and plane tickets to and from are NOT cheap! At least 500$ R/t for ONE person!

 

I have always wondered "when" I would reach this decision, but I think earlier today I DID..

 

I have realized that my dad seems disgusted when I talk to him. Oh, he'll laugh from time to time, but for the most part, he's always angry. I figured it was because of the stroke and paid it no mind. But he is ALWAYS in a chatty and happy mood with the CNAs!!

 

In short I am beginning to feel I have overstayed my welcome here. Our family was never close, and seeing how much both my parents have "bonded" with our CNA is hurtful.

 

I was thinking today that perhaps it's time for me to go on with my life, go back home. Both my parents are so chatty with the CNAs and seem to pretty much avoid my husband and I. Well, my dad cannot really talk clearly, and he is always in the bedroom watching TV day and night, but my mom seems to ... I guess not need us.

 

Please let me know what you think. Pm me or answer via post. I'll check back. Thanks. Cathy

 

 

I read this site from time to time, post when I can, and learn a lot of things from people. Mostly lurking, I found this is a great site, but a common thread I have found is, is that some of you have have been caregivers for years with no end in site. I guess I am looking for affirmation that some are not meant for this role, and that trying to get out of the caregiver role is full of guilt, angst, anger and confusion.

 

I have decided as an only child to a stroke patient whose recovery is at a standstill, that I have to make changes both for my sake and her sake. Mom was doomed from the start because of her aneurism 18 years ago, and she could not receive clot busting drugs when the stroke hit. I had psych evals done in December for her and they said this is as good as she is going to get and will need 24/7 care for safetys sake. This news was devastating and a relief. This gave me the nudge I needed to make a move for her that suits her needs and frees me to work and have peace of mind she is being taken care of.

 

But why do I feel so shitty about this?! I am soon to be divorced, I have no children, I have a job that is going to require travel, a home that needs work and her home that needs fixing up to sell so she can have more money to stay in this assisted living home. I have done this for 7 months, mostly alone with help from 2 other people. I have stayed home from work almost 2 days a week and tried to work from home without compromising my job.

 

I am tired of washing bedding and clothes each day

I am tired of fighting to do therapy

I am tired of showering a fragile body

I am tired of wiping a messy butt

I am tired of saying swallow the pills don't chew them

I am tired of cooking all 3 meals a day

I am tired of the "WHY?" and the "HOW COME?"

I am tired of the "gosh darn dag blamit you, you son of a bitch" when I try to help

 

I know she suffers from a stroke and lack of mental capacity, but she is starting to isolate herself in her own home. She wont go out anymore, she wont do anything anymore and not one of her many friends has offered to help in the last 7 months.

 

So I january 30th my caregiver role ends, but I feel like I have given up. Like I should try to do it longer, but I just cant. When I read posts here I cant believe that some of you will and have done this for years. I need affirmation that the caregiver role is not for everyone, and that I at least tried it, mostly alone, and that my decision is a good thing.

 

So this post is for the former caregiver, the one who broke away, the one who tried and said I cant do this anymore. How did you move on and get over the pain of letting go.

 

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Just wanted to point out that mottm has not logged into the site since Jan 29, 2007 so there may not be replies to current posts. - Donna - MBM

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I'm not quite sure what that means?? Does that mean nobody will see my response to mottms post?

 

Well, you did. Seeing as you didn't reply, does that mean don't have an answer??

 

 

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As I am a survivor, I do not have an answer from survivor standpoint. Have you tried to talk to your folks about what you are feeling? Does your hubby feel the same way you do? As you stated, there are adequate staff coming into the home who your parents have accepted and who are performing a good job. Should you definitely decide to move out and back to your own life, remember to do so w/o guilt...as you said, it's not feasible to just stop bye and visit if you are in a different state.

 

I'm sure to that some of our knowledgeable caregivers will respond as well with their insights and suggestions.

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