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annit77 Asked January 2023

Just needing to vent. I feel stuck. Any advice?

I've been caring for my grandparents since last October. I started out 5 or 6 days a week. My grandpa passed last February and I've been my 91 y/o grandma's caregiver 7 days a week. I've had 3 personal days in almost a year. About a month ago she started experiencing intense pain due to deterioration in her lower spine. She is now not able to lift her legs and is not able to get around at all without assistance and I've been here 24 hrs a day 7 days a week. I have no help and can't go home and she begs me to not to transfer her into a nursing home. She and everyone else just expects me to give up everything for her. I miss my home, my dogs, my husband, my life. I know I just need to suck it up and adapt but I'm only a month in and I feel like I'm losing myself completely. Thanks for listening to me vent.

lealonnie1 Jan 2023
Exactly why do you 'need to suck it up and adapt'?? You are a granddaughter/son.........where is grandma's CHILDREN, aka your mom and dad? Why have you been relegated to be this woman's 24/7 caregiver? And what about YOUR home, your husband, your life and your dogs? Why do they get to suffer while you devote your entire life to caregiving 24/7???

And what person who claims to love their grandchild 'begs them not to transfer her into a nursing home' and acts THAT selfish, knowing the huge burden they are not being able to get around AT ALL? Are you lifting this woman? What happens when YOU need to call 911 for YOURSELF and your own broken back?

This situation is not sustainable at all, yet for some reason, you feel beholden to your grandmother as her only source of help 24/7, to your own detriment, and at the expense of your family!

I say, tell your parents or whoever else is grandma's POA that you're giving your 2 weeks notice. If there is no other next of kin involved here, give grandma one month's notice that she will be moving into a nursing home, that you've done your level best ALL this time to care for her, but that you're not going to sacrifice your health, your back, and the rest of your life in servitude to her for no good reason now that she's become immobile. You love her and will visit her often in her new location where she will have others to socialize with and an entire staff to wait on her 24/7 rather than one exhausted and burned out human being.

Wishing you the best of luck seeing this untenable situation for what it is. Unstick yourself right away, you can do it!

BurntCaregiver Jan 2023
Hi, Annit. I want to start by saying I think you're a great person to be trying to help your grandmother and also because you will not put the burden of caregiving for you onto your own kids. Most people don't understand what a burden it is.
You've done your best and now it's time for your grandmother to go into a nursing home.
When you say 'she and everyone else just expects me to give up everything for her' who are you talking about? Siblings? Other family members?
I'm so sure your kids and husband don't want to see you so beat down from caregiving that you're utterly defeated in every way. I'm so sure your friends don't want to see that either. So we are left with the people who do expect you to be a care martyr for grandma.
You don't need them. You need the people who want the best for you. You need the people who love, support, and care about you.
Not these people who carry on about how lucky you are to be allowed the great privilege of being an abused caregiver.
Cut these a$$holes out of your life. It doesn't matter what they think.
You have her POA. Put her in a nursing home. If you don't know how to do this, have her brought to a hospital ER and ask them to do a 'Social Admit'. Make sure to use this term. Tell them that you are unable and unwilling to continue being her caregiver and that she has no other support at home because you're going back to your home and family.
The social workers will try to talk you into taking her home. They will make all kinds of promises of care services and resources available if you agree to.
It's a lie. You will get little to nothing as far as these care services and resources are concerned if your grandmother is not rich.
If you stand your ground and refuse to care for her at home, the hospital will admit her and will keep her there until they find her a bed in a permanent care facility.
annit77 Jan 2023
Thank you. You are correct. The last time she was in the hospital we were promised home health and physical therapy. Nothing happened. I called several places to find out what was going on and insurance had denied the request. I'm going to set a date and give myself a time limit on caring for her. If nothing changes I'll make the necessary hard decisions I need to make.

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LoopyLoo Jan 2023
“I know I just need to suck it up and adapt.”

No, you do not. Your husband and family come first.

MJ1929 Jan 2023
Feelings of guilt and obligation do not equate good care. Grandma won't get better or be in less pain because of guilt and obligation.

Find a facility that will meet Grandma's needs, tell her you are not abandoning her, then visit when you can.
annit77 Jan 2023
I do love her as well. I didn't mean to sound harsh. I was only venting. There are no happy endings here and many emotions. I do care for her for the best I can and I do have a medical background. I'm going the best I can given the circumstances. I'm going to try to reach out to a social worker, and maybe try to get some guidance. It feels impossible in my area to get help. It seems like help if only available if you're rich or extremely poor.
Mannyar Jan 2023
No, you don't need to "suck it up". I did this myself at age 35, moving back home to take care of my grandparents, but I was not married and had no kids, not even a dog. And I would say it was the hardest thing I've ever had to do, and very disruptive to my life, in general. Unless you are willing to allow your relationship with your husband to disintegrate slowly, and have no current career ambitions, you need to seek alternatives for your grandmother. Those include nursing home care, despite her attitude towards that. Even if you decide to undertake this, understand that your emotional health will greatly suffer (mine did) and your grandmother could easily live another year (or two, or three). The bottom line, you WILL burn out and could even suffer mild PTSD from the sheer intense nature of this caregiving. I certainly did. Even today, I cringe in hospitals and become anxious when I reflect on this experience. But it was, by far, the most spiritually rewarding thing I have ever done in my life. Be very careful with your choices going forward.

NeedHelpWithMom Jan 2023
You don’t need to “suck it up” for your grandmother!

Go home. Live YOUR life! I am not a grandma but if I had grandkids I would want them to be happy living their own lives.

AnnReid Jan 2023
Grandma’s begging has 100% nothing to do with what living situation can help her be safe and in less pain.

You may be jeopardizing both your welfare AND HERS by staying in a situation that is NOT MANAGEABLE for you to do.

Be prepared for family members to be mad (or furious) at you- if you bow out THEY may have to actually HELP, and NOBODY wants to do THAT. Ooops, you’re actually doing it…….

Does anyone have POA for Grandma? If so, inform them that YOU ARE FINISHED, as of whatever date you choose.

DO NOT talk to Grandma about her situation or yours. Do not say goodbye to her.

JUST LEAVE.

annit77 Jan 2023
Thank you for advice. It's definitely helped a little in expanding my thought process. I'm P.O.A She has two sons that have passed and her daughter, my mother, is in the hospital with a perforated duodenal ulcer. She has a long road ahead of her as well. I appreciate the feedback so much. I told my boys (21 and 25) that they will never take care of me. I would never put that burden on anyone, especially my children/grandchildren. I've tried to talk about how I feel to people I feel close to and I usually get "you're so lucky to have your grandma and you'll appreciate the time you have had with her". I'm sure I'll have some Good memories, but most of what I experience is huffing and puffing, and cussing under her breath because I don't do or say things as she wants. She's not mean but it's very upsetting feeling like I can't seem to do anything right. She's hard of hearing too so I'm basically yelling all day. She refuses a hearing aid because of vanity. Sorry, I'm still venting. Thank you guys so much for listening. I've been feeling so down the past few weeks.
ElizabethY Jan 2023
Hi annit77,
I agree with the other posters.
And I can't help you with much, but I used these two things with my mom-same problem, won't use a hearing aid. These are big enough they won't get misplaced, don't cost a lot, and are easy for an elderly person to use. I got them at amazon.
''Reizen Mighty Loud Ear 120dB Personal Sound Hearing Amplifier''. It was about $35.00 when I bought it, it's about $50.00 now. This one is easy to use--it just has an on/off switch and a volume wheel. (There might be cheaper ones out there.)
I also bought these cheap headphones-they work great and don't get lost.
''Panasonic Headphones, On-Ear Lightweight Earphones with XBS for Extra Bass and Clear, Natural Sound, 3.5mm Jack for Phones and Laptops, Work from Home - RP-HT2''
When I found myself raising my voice at my mom because she couldn't hear, I would also start to feel my level of exasperation rise. Not a good place to be. I had her put on the amplifier and headphones, explaining that I didn't like to yell at her. Whenever she had issues hearing I would stop, hand them to her and then talk once she had them set. The headphone jack should be compatible with older ipads and some phones, so if she wants to listen to music that way that might give you a break? Listening to music would put my mom in a good mood.
But yeah, you've put in your time and your grandma needs an alternative.
CJLC1234 Jan 2023
I was in the exact same situation with my mom. My mom had dementia and absolutely refused to go to assisted living or nursing home. I spent at least 4 years being at her beck and call including living with her sleeping on a blow up mattress.. I have a sister that lived closer to her but refused to help.
You absolutely do lose your own life and what's even worse now is that she passed away last year and I feel even more lost now. Not because she's gone, I know she's in a better place, but because I have lost myself and some friends that I could not see in all that time. I am trying to get on with my life but it's been so hard. I don't know what my purpose is anymore.. so please don't let this go on for as long as I did. The lasting effect is not good on ones mental health.
BurntCaregiver Jan 2023
@CJLC1234

It breaks my heart to see so many people and families being obedient still to a demented senior.
It's so hard for families to accept that once the elder starts needing caregiving, they cannot be allowed to call all the shots anymore. They cannot be allowed to be in control of everything and everyone.
Pretty much every elderly person absolutely refuses to go into an assisted living or a nursing home. Or even to allow anyone other than people of their own choosing to help them at home so they can remain at home.
This does not mean that they have to be obeyed. We do not obey the demands of a toddler or little kid because they throw a tantrum. We know that they do not have the capacity to make reasoned and logical decisions. We don't engage in a fight with a toddler or little kid either. Granted, I've seen adults who have and who will obey the child which is totally wrong. A senior with dementia is pretty much the same thing. I was an in-home caregiver for 25 years. I wish I could have told you what I told every family member who was at the end of their rope with some senior LO's 'stubbornness'.

Caregiving is only successful when it's done on the caregiver's terms. Not the care recipient's.

If placement is in the best interests of a senior and their family, then the family should get them placed.
If homecare is an option then families should try it. If the 'stubbornness' gets to be too much, that unfortunately usually has to result in families waiting for something bad to happen like a fall.
I am sad for you that you allowed yourself to be a care slave for so long and I hope you find the closure and peace you deserve.
It's still a choice though. Like you said your sister refused to help. She chose to not be a caregiver and is not wrong for making that choice.
geddyupgo Jan 2023
Ok, you've vented. Now you need to heed some of the great suggestions on the forum. I personally don't think anyone should have to give up their life to take care of parents, grandparents etc. unless they totally want to but consider who else you are harming with your current action. Your husband, your pets all need you. 24/7 for one person is a lot of work. Ask the nurses in NYC who went on strike this weekend -- not just for better wages but for more staff so they can provide adequate care for patients. You just can't do it all by yourself. And what happens to GM when something happens to you?

As has been suggested, get in touch with your local Office on Aging and find out how to get a full geriatric assessment. GM may be eligible for some home health services or they may suggest some form of hospice care. In any event, let the family know that you are going back to your family on X date and will only be available for x hours per week to help out..

Now if she goes back to the ER at any time before the OoA assessment. you find the ER social worker and tell them that they can do a social admit because you are leaving "right now" and there is no one at home who can care for her. They will try to tell you to take her home and they will get you help. You grow tomatoes on that line of bs!! It's lie. Smile at them and leave, yes GM will be crying and begging you not to leave .. keep walking and don't look back. It will be one of the hardest things you will ever have to do; sometimes you have to steel your heart to do the right thing when you love someone. And in your heart you know that your staying with GM 24/7 while your marriage disintegrates is not good for GM, you or husband.
This is a difficult journey but you can do it. Peace
BurntCaregiver Jan 2023
@geddyupgo

The line about growing tomatoes on that line of bs was awesome and also totally true. Everything you said is spot on too.
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