I have now been my mom's caregiver going on 2 years. I feel more like her Warden instead of her daughter. My mom has Alzheimer's and my siblings don't help at all. She barely can walk and refuses to use her walker. She also has a colostomy bag that she can't manage. So needless to say I have my hands full with her. I too suffer from an auto immune disease called AS and some days the pain in my back is unbearable. I also have a 14 year old daughter and a husband. I left my job to take care of my mom. Due to having AS my doctor suggested that I file for disability and that is still pending. My mom's so defiant and getting more and depressed every day. She praise my siblings who hardly ever visit her but gets so angry with me because she can't chew gum because she swallows it and it stops up her stoma for her colostomy bag. She can't stand more than a minute and is addicted to pain pills and Xanax. What can I do to make our living situation better?

These elders ALWAYS do better with strangers than they do with their own loved ones who break their backs trying to care for them. And there's no gum allowed in Memory Care residences at all, so that's how she learns to deal with the word no. By hearing it from others she's less likely to strike back at. My mother lives in Memory Care, and constantly asks me for gum. The answer is Gee Sorry, No Mom, They Don't Allow It Here. Then I get to go home and not hear about gum until the next visit.

You have to ask yourself who's life is 'more' important? Your life or your mother's life? Is her life any more valuable than yours? Or are your lives equal, as all human lives are intended to be. Because what we see here quite often is a care giver believing with all of her heart that her mother's life is way way way more important than her life. And her mother's comfort and well being takes top priority over her own comfort and well being. So there is endless jumping through hoops and what most care givers find out is............the demands just keep getting bigger rather than the elders' needs are satisfied and she's happy.
True story.

So your mother requires a lot more help on a daily basis than you are able to give her, yet you are willing to put aside your own immune system disorder so you can attempt to fulfill her needs which will likely never happen.

See where I'm going with this?

My mother has lived in Assisted Living and now Memory Care since 2014. I can tell you with 100% certainty that she'd have died long ago if she wasn't in Assisted Living. They have caught pneumonia 3x already, all sorts of things. Her care there is much greater than her care would be living with me, b/c I'm only one human person. Versus teams of people to care for her over there. Medication management, activities, doctors and dentists who come into the facility weekly to visit the residents, podiatrists, hairdressers, you name it. 3 hot meals a day and 3 snacks, plus what we children bring in. Not a bad deal at all.

And when my mother's $$$ runs out in 2021, I will apply for Medicaid and have her placed in Skilled Nursing where they are well equipped to handle her myriad needs WAY better than I am at home, as one human being. Just the fact that she's wheelchair bound ALONE makes her impossible to move around at 190 lbs of dead weight.

So, to answer your question, what you can do to make BOTH of your living situations better is to move your mother into a care residence where BOTH of you can move on with your lives.

Best of luck!
Helpful Answer (3)
Reply to lealonnie1
Frances73 Jul 30, 2020
I couldn’t have said it better myself.
Kuddos to you for stepping up to take care of your Mother. I take care of my 82 year old Grandfather with Alzheimer's and have been for 4 years so I know its not easy. Have you thought about getting help from the state? They will provide an experienced CNA or PCA to come in and assist. It will allow you to have time for yourself and family with the the confidence of knowing your Mother will be OK. Plus people with Alzheimer's sometimes do better with strangers.
I also completely understand the frustration of not having help from the family but just do the best you can and not worry about them.
I hope it all works out. Let me know if you have any questions
Helpful Answer (1)
Reply to TonzTee

A too large percentage of caregivers die before their charges.

It is just that stressful. Get help and plan for the future when she will require even more care.

Hire a caregiver to come in for a few hours a day and present the bill to be split between your other siblings. (You have already PAID your share!) Let yourself breathe.
Helpful Answer (1)
Reply to Weeroo

So sorry you and your family are going through this but please know that you are not alone and it is what happens to most of us who are responsible and have parents who live longer lives. And of course, the care giver child, the responsible one, takes the brunt of the abuse because they are visible while the other siblings are not!
Based on Mom's health and mental issues and the need for you to take care of your own health and be a part of your husband's and daughter's lives, it would be a very good idea to consider possible placement for your Mom at this time. So get the DPOA, health care proxy and living will documents in order (you will need them eventually in any case).
Is Mom living independently, in your home or are you living in hers? That is a major question and, depending on your state, it could be a factor in Medicaid's financial review.
Although she probably needs MC, as others have pointed out, it may be difficult for them to deal with the colostomy bag so LTC/NH facility may be a better option. Finances will need to be considered. Not sure where you are but any care facility is going to cost money, with the LTC costing the most (in NJ the minimum LTC runs about $9000 /mo). What kind of finances does your Mom have and how long will they last? Will she have to apply for Medicaid now or at some point to pay for her care at an LTC ? If so, you will definitely want to make sure that any facility that you review will guarantee her a Medicaid bed when the time comes. If she has assets (savings, CDs, home ownership) Medicaid will expect them to be used for payment of her care, room and board at the facility. In NJ Medicaid takes a 5 year look back to make sure funds have not been gifted or utilized in any way to make a person eligible for Medicaid. Make a journal and keep receipts for your Mom's funds (clothing, food, prescriptions ,etc) that are being used now, (that should any funds she is paying you for being her caregiver) so you will have a record. You can review facilities for rates, requirements and activities via phone to narrow down your choice but nothing beats a visit; try to schedule at least two visits, one of which should be unannounced. Don't be overly impressed by the front lobby - it should be neat and clean but it doesn't have to look like Windsor Castle with chandeliers. Ask to see the activity schedule and the menu for the week, and if you can get a test meal, go for it checking out the food and the way the residents are helped during mealtimes. Ask about the number of showers that are given per week and the ratio of staff to residents during day and night shifts. Watch for the interaction between residents and caregivers -- it is really friendly, respectful and professional. It goes without saying the facility should both look and smell clean. That's all I can think of quickly but feel free to contact me if you have any questions.

Just fyi, I was the Dir. of Admissions for a government owned LTC for 8 years, my Mom was in a rehab facility for 3 months before her passing (btw.... I got a job offer from that facility about a year after she died), I was the Dir. of Guest Relations at a LTC and I currently have certification as an Assisted Living Administrator. I've been around the care giving block...... a couple of times!
Good Luck and hang in there.... you are not alone.
Helpful Answer (2)
Reply to geddyupgo
NobodyGetsIt Jul 27, 2020
I appreciate you using your own professional experience to advise not only Serronale but, the rest of us as well. I wish I had know some of the things you mentioned when I was looking for an AL facility for my mom back in late 2014!
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Please get some outside help. You have gone above and beyond your responsibilities and have no need to feel guilty. Your mother should be moved to a facility so you can get your life back.
Love and good luck to you.
Helpful Answer (2)
Reply to Doingmybest101

I know how you feel. I had to "harden" myself to become the adult and Mom the child. She was basically easy. But I worried about bathing her, what do I do if she falls. The toileting was the worst. Being woke up nightly to her wandering around her room. It was like caring for a toddler again. I did have a young woman come over every 3 days to shower Mom. Eventually I placed her in a Daycare. Gave us sometime to get things done. I had her living with me 20 months when we planned a trip. I went to a local AL asking about respite care. Found they were having a sale on rooms, 1/2 the usual rate, and ended up placing Mom. Best decision I ever made. Eventually the money ran out so I had to place her in a nice NH on Medicaid. By that time her Dementia had progressed to the last stage so she really didn't know what was going on.

I too suggest you place Mom. She will need more and more care. And its not fair to your 14 year old. These are the years you should be enjoying with her. She is going to have a number of "Firsts" you need to be there for. And like said, your health problem, stress only makes worse.
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Reply to JoAnn29
NobodyGetsIt Jul 27, 2020
Well said "JoAnn29". You mentioning that her daughter would soon be going through many "firsts" is so true!

I'm glad your own situation had a positive resolution to take some of the burden off you.
Please listen to the others here and consider placement.

My dad would never have placed my mom in a million years, but he didn't expect me to sacrifice my life if he wasn't there. After he died, I placed her in a memory care close to me, and she's doing far better than she did with my dad.

The thing you need to realize is that caring for an elderly person is a skill and people who are trained to do it are able to do it so much better than we can. That improves the quality of life for that person as well as yours, so please don't hesitate to do it.
Helpful Answer (7)
Reply to MJ1929
NobodyGetsIt Jul 22, 2020
Thank you "MJ1929" for saying it is a "skill" - one that I did not have!! So it's important to recognize ones own limitations - and I did! As I've said in other comments on the forum, I'm extremely task oriented; shopping for my mom's basic necessities while in memory care, handling all her finances/paperwork, making calls on her behalf etc., but medical wise? Terrible!! Also, my husband and I have never had kids and I'm almost 58 so I won't be learning from that type of experience.
It might be time that you seriously think about placing mom in a Memory Care Facility. Although with the Colostomy typical MC may not take her so a Skilled Nursing Facility might be where she would be. The problem with Colostomy bags or even Feeding Tubes people with dementia are more apt to pull at them and create more problems. Because of this many MC facilities do not want to deal with the added care.
You need to be concerned about YOUR health and YOUR family as your first priority.
If your siblings resist the idea of placing mom in a Skilled Nursing Facility or MC then the option is they can care for her. Since YOU are caring for her this should be your decision.
Helpful Answer (3)
Reply to Grandma1954

You don’t need to make situation better for both of you. You need to improve it for you. So figure out what you need. She really should be placed somewhere. However, I don’t know if memory care would take her due to colostomy. She may need nursing home. Start by locating facilities that will take her That she can afford. If she would need a Medicaid placement, get her on the list. In the meantime if sibs are local, they either need to help or pay for some home care. Or, If she has money, maybe you Do a contract to have her pay you since you quit your job to care for her.
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Reply to dogparkmomma

Dear Serronale,

As an only child/daughter to a 95-year old mother with Alzheimer's, I understand your position. I have never lived with my mom after my dad passed away in 2004 but, I was her caregiver going back and forth from our house to hers for ten years. Of course, as the disease progressed it required more and more from me. I knew my limitations though. My mom wanted to stay in her house until she died. That simply wasn't possible and I had to move her into AL back in 2015 and clear out her house to sell it in order to pay for the rent. I started experiencing pain in my temples, the doctor ordered bloodwork along with a brain scan and was alarmed and one day later I was having surgery. All stress induced - my prognosis was I could have a massive stroke and die or become permanently blind. So since you have an auto immune disease already, I'm sure this is making it even worse!
My mom is in a new facility as of May and in a memory care unit where she is getting better and more frequent care than in AL. I would strongly recommend you consider doing that for your mom and yourself/family.
As for the Xanax, I know my mom used to take that a very long time ago. My doctor says at some point, it is no longer effective. My mom has hospice involved and they have put her on a very low dose of medication to take the edge off as well as to help her sleep through the night not only to prevent her falls but, when someone doesn't sleep well or get enough of it, it definitely affects our moods and emotions.
I have also heard how common it is for a parent to give praise to their kids who don't have any involvement in their care while being unpleasant or abusive with the one left to take care of them such as what you are experiencing. I tend to think it's because you have rules (or at least try to) and your siblings allow her to do anything - why? because they aren't there to set any limits, rules or boundaries.
That being said, she really needs much more than you can provide. You're suffering and I'm sure your 14-year old daughter and husband are suffering. It's time to turn over the caregiving to ones who are trained to do so and start picking yourself up so you can take care of yourself and your family. I wish you the best and hope to hear an update somewhere down the line!
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Reply to NobodyGetsIt

There honestly may be a limit to how much of the rest of your life you are willing to give up. This is 24/7 full time work. You aren't a Saint. You have limitations. Sainthood is a very bad job description, anyway. Try now to make take a real inventory of the wear and tear on you, and make some plants for the future. I am so sorry you are going through this; not everything has an answer. It is worth grieving about and worth despairing of, but it isn't worth giving up your own life to. Do consider placement, or at least let the thought enter your head now.
Helpful Answer (6)
Reply to AlvaDeer

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