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I think I know the answer but perhaps there is hope? My grandma has always lived with us: my parents and 2 siblings. She pretty much raised us (me+sibling) and always gave me the nurture and comfort my mom has always lacked. She has been in my life for 32 years now, my age. She has 6 children (1 diseased) and 18 grandchildren. Even though she has lived with us she never not visited for long periods of time her other children and grand kids. She has been part of each an all of their milestone. I though we were the perfect close and loving family, boy was I wrong.


Present day my grandma is very sick. She receives dialysis 3 times a week, her dementia (Alzheimer) is worse. Often she is dazed and confused, a world of delirious state. There are more bad days than good ones. My mom, the care giver, hasn't had the patience with her and realistically doesn't do a good job taking care of her. Her bedding smells bad, her clothes smell bad, she needs bathing, and someone to actually clean her. My mom does cook for her, she also takes day off work to take her to her doctors appointments but it's not enough. I moved in last year and on my days off I have washed all her bedding, clothes, bathe my grandma, cook for her as well. When she uses the toilet I wipe her, I make her brush her teeth and wash her hands. I go to dialysis with her and spent all 4 hours there. It's not easy. If I can why can't she (my mom)? I do get frustrated and I also raise my voice and I instantly regret it. I am just so desperate. I am angry at my siblings, at my mom, my uncles, aunt and cousins for not stepping in more. All her grandchildren have forgotten her too. They stopped visiting a long time ago (when she got sick) and her children don't invite her out anymore and when they come visit it's only for a couple days/hours once or twice a year. One of my uncle thanked me for taking care of her but also reminded me that my caring for her is paying her back the time she spent with me.


My parents work full time and so do I. My mom is a hoarder and as much as I ask her to get rid of so many unnecessary things she won't. I was hoping for a hired in home caretaker but that won't be happening. I contacted a social worker to help me find a day care center while we're all out at work (she has fallen, she has left the oven on, she gets out the house so I got stressed out thinking I might find her dead one day). It was a long process but it's happening. I take the initiative, my mom and my siblings don't. If they're home they're in their rooms not taking her of her, she actually fell under my sister's and brother's watch while I was at work. I am so upset and have this anguish feeling for the past few months every time it's time to go back home whether it's from work, running errands, or anything else. I don't find happiness at home anymore all I feel is sorrow and that I am still not doing a good job bc my grandma deserves so much more. She is mentally and physically doing worse. I sense it's her last few months if not weeks. Even my mom has changed a bit of her demeanor towards my grandma, she is more patient. The rest of family is all hiding under rocks and I would hate to see them crawl out when it's too late. I'll probably kick them all out.

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You’re doing a good job with your grandma. However you cannot expect other family members to do what you are doing. Some of your relatives may not have had the same loving relationship that you have had with your grandma. And not all people are cut out to be caregivers. The other consideration is that there may be things going on in their lives that may preclude them from helping.
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Ahh, family dynamics. Can be so convoluted sometimes. Add caregiving? Often turns 'messy' very quickly. Your grandma is so lucky to have you. This may be difficult for you to understand. Took me waayyy to long to get this. But if you're not 'ok' yourself, whatever that may mean to you, you're not really any good for your grandma either. (I don't mean to sound offensive with that).

And sometimes, we have to get assertive regarding their care. Maybe don't wait for the doctor to call you back. Stay on them as it sounds like you know the help is needed.

We can't control other people's decisions. Just isn't possible. They may crawl out from under their rocks, or they may not. And if it's too late when they do? That's their cross to bear, as they say.

It kinda sounds like you are caught in the middle of this situation. I just hope you continue to do the best you can, given the situation and accept that's what you're doing. You may not be able to control the outcome, but eventually, you'll sleep well at night. Knowing you did the best you could, given the circumstances. I wish you well.
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I feel for you. I really do. You are doing something extremely self-less here. I urge you not to be angry at your siblings, mother, aunts, uncles and cousins. It’s not healthy. That energy should be focused elsewhere. Is your family communicating? Is everyone aware of how sick grandma is, how much care she needs and how much of a burden has been placed on you? Sometimes communication is the missing key. Have you asked for help? If you haven’t, maybe your siblings think you have everything under control. You also need to consider that your mother also works full time. She is a wife, mother and daughter. She has a lot on her plate too. She sounds burnt out and so do you. Think about YOURSELF. Look what this situation is doing to you. You are no doubt making sacrifices. Don’t forget to take care of yourself. Your health and your sanity is just as important as taking care of your grandma. Your grandma sounds like a true matriarch. I understand wanting to give back, to reverse the roles and take care of her in her time of need. But she may need more care than any of you can provide. You can give back to her and repay her by giving her the best care possible—and that doesn’t mean keeping her in the home and taking care of her yourselves. Sometimes giving them best care possible means placing them in a skilled nursing facility. I also think hospice should be considered. She doesn’t necessarily have to be in her final months to for hospice. Hospice will provide you with a lot of support. You can arrange for the aides to visit on your days off so that you can get a little break.
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ineedsupport32 Feb 2019
It's funny bc in a way it feels as my family has put the burden on me and not my grandma herself. It's amazing how calm she becomes when I speak to her respect. If we all worked together and be on the same page oh how easier things would be! For example, my mom refuses to wipe my grandma after using the toilet or when bathing she does not want to go too personal. But it must be done so I do it.

During her sun downing episodes I have step in even after my mom attends to my grandma bc my mom screams at her (not that I haven't). I've last my wits too but the difference is I regret it immediately and apologize and feel horrible but my mom doesn't she just gets angrier by the second. So it's hard. My mom is not a bad person she is just not meant to take care of others including children.
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You are wonderful. You have taken my breath away.

The situation that has been allowed to develop in the household is a mess. You have intervened, you have got things moving, meanwhile you are giving your grandmother so much loving care.

I would also like to add an extra medal for not spitting in your uncle's eye. He *meant* well, as my late mother would have said... but then again, as with people who are 'only trying to help,' people who mean well when they say such things can leave you more incandescent with rage than those who are trying to be nasty.

It seems that your mother lacks nurturing aptitudes. Some people are no good at it, I know my mother wasn't. Since your mother clearly isn't just bone idle (mine neither) and has her own demons to wrestle, do your best to overlook the shortcomings.

I really hope the services are on their way and things will improve very soon (thanks to your intervention). But meanwhile. You either are or you aren't the kind of bossy boots who can put together a rota and force people to take their shifts; but if you were that kind of person I think you'd already have done it, and I also don't think it would be great for grandmother, because of her dementia - she might find it frightening or confusing to have family members around en masse, all of them the wrong age for who she thinks they are.

How are the memory care facilities in your area? Don't dismiss them if you haven't been to look - there are some now which are really, really good.

What else can people do that would be helpful? If you can come up with an actual list of defined tasks, and you can match some of them to individuals, think again about just calling round and telling them they've volunteered. If you wait for them to offer, you'll wait forever - getting angrier and angrier.

Or money. Would it help if they put their hands in their pockets and contributed towards in-home services?

It may be that they won't come out from under those rocks no matter what you do. But at least try winkling them out. Could be everyone is waiting for someone else to say something, or they're all talking to one another and saying oo isn't it terrible but what can we do.

If you have another go at it, and nothing will make them budge, then at least you will have something specific to blame them for when you're booting them out of the house.

Good luck, please post more, let us know how it's going.
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ineedsupport32 Feb 2019
Thank you. My mom has communicated with the rest of her siblings but they each have an excuse and it just leads to arguments as my mom doesn't have much patience with anything. One uncle lives in another country (retired), another uncle (retired) and aunt in another state, and my other uncle lives just about 30 minutes away but he doesn't drive and makes the minimal effort to come visit or help w/ appointments. It hurts the most bc when his wife had a TBI my grandma became hers and their 2 children caregiver for a very long time while he worked.

They have suggested monetary help and for us to hire nurses to come home and help with my grandma full-time but that hasn't been an easy task as I have tried to look for those type of services and can't find them or are super expensive, we're not rich. They offer help but just a few hours.

We'll see, thank you :)
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You are doing so great in such a difficult situation! Have you tried contacting Hospice, as you said that your Grandma may be nearing the end of her life? I would bet that the Dr who manages her Dialysis could reccomend a Hospice group, as well as qualify her with the proper diagnosis.

There is also support available through your local Counties AGENCY ON AGING, just look them up (GOOGLE) using your zip code, and they can send out a Social Worker to see what individual help she and your family might qualify for in caring for her.

I know how difficult a journey this really is, as my husband and I cared for his Dad in our home for 13 years until he died of Cancer, and we had incredible support there in the end from or Hospice team. I also come from a family who had my Grandmothe come live with us from Wales, UK, and she ultimately dnded up with Severe Alzheimers, and became too much for my Mom to continue to care for her, it's so hard!

You must know that your own Mom is incredibly burned out, as Caregiving certainly takes it's toll on you physically and mentally, I am sure you are a Godsend being there to help your parents through this difficult time, so remember that.

Also, it may ultimately come down to your Grandma needing to go into a Nursing Home, and there is No Shame in having to do so! Your Gran will get good care, round the clock 24/7, and you will still be able to visit and continue to care and to advocate for her, but you won't feel so tired and desperate all of the time. As much as you Love and Care for your Grandmother, deep down inside, she knows that you Love her, and she would not want for you to put your life on hold in caring for her, so please do not rule out that option either, plus Hospice can be an added layer of care in a Nursing Home, to make her transition into the end a more comfortable experience. It is Not giving up on her, but can be the most loving thing that you can do for her and your family!

You have come to the right place to get Excellent advice and support! I stumbled onto this AC WEBSITE over 6 years ago, when I was at my lowest of lows, and have found this a Wonderful Community of like minded Caregivers, who will step forward to give you great advice as well as lift your spirits when you are down, so stay a while, and look through the many different "threads' that interest you, this site has helped me in so many ways, plus I have formed some Real Friendships with many of the kind folks here over the years, both young and old!

You have taken the firsts steps in getting your Grandmother good care, so pat yourself on the back, as your Compassionate and Loving Nature is such an Admirable Quality to have and you will learn much about youself as a person through the adversity. Good Luck and Take Care of You Too!
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ineedsupport32 Feb 2019
Thank you very much. I have not contacted hospice bc I guess I have avoided accepting finality. However, my grandma is beginning to be in pain and it's heart breaking. Usually she recovers but I've seen her declining these past few weeks and she has not bounced back. Everyday it there is something new.

I look up to my elders which is my mom and uncles hoping they could make final decisions but they look at me to decide what to do next. I spoke to her PCP and she did mentioned hospice but she hasn't contacted me back. My mom spoke to her a week ago again and said someone would be calling soon. We're just waiting.
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I feel some empathy towards your mother. She works a fulltime job, yet you think she should do more? How would she be able to do the 4-hr dialysis appointments and keep her job?

Sounds like it's time for Grandma to go to a facility, as she needs far more care than a household of people working fulltime outside of the home can provide.
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ineedsupport32 Feb 2019
My mom does work full time and so do I. I offer to cover all her bills if she takes a LOA from work but she declined. The other problem with my mom is the way she goes about things. She can be very mean and I don't like the way she has talked and treated my grandma through this whole ordeal. She is not verbally or physically abusive but she is just VERY short tempered and can be very cruel with words. Lately, these past few weeks she has made a change and I think bc she knows the time is close and my grandma is so fragile now. So she feels bad, I can tell.

The one reason we have not decide to send my grandma to a facility is bc that was her worst nightmare. But then again like me, she thought we were close family and never in a million years we thought she would be so sick. She gets very anxious when she is away from home or from people closest to her.
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I hate to ask, but who has POA for your grandmother?
The daycare is a wonderful idea for now (kudos to you for making that happen!) but the time will come when she needs more care, and unfortunately it seems as though you are the one who will be responsible for arranging that... better to plan ahead for the worst case scenario than to have to figure things out on the fly after a crisis.
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ineedsupport32 Feb 2019
It is in the process and most likely it's going to be me. You're very right!
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Honey, {{{{{{hugs}}}}}}. Deep breath.

It sounds as though you are the sane one in a family that has experienced a lot of mental illness. Living with mentally ill folks can make you feel crazy!

I'm so glad you found a daycare for gma! At least she'll be safe during the day.

Stick around here and vent all you like. Just remember, the only one you can change is YOU.

I honor you for the love you feel for your gma and the care you are giving her.
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ineedsupport32 Feb 2019
Thank you so much. It feels great to vent. :*)
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