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.
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!
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.
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.
Difference is my mom is on hospice and its not a "no one knows" dx at this stage. So. Her sundowning is going to ead to, well. The actual setting of the final sun, soon. But if there's no such dx with your grandmom. IT's just not fair to you.
as someone who knows where MY family is, I can ask, but not dramatically :/ where your gma's is. I am the daughter and would never saddle my neices with this. The ones who would help, just lost their father this year and I don't think they're ready to handle a grandparent on hospice yet after that. :/
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.
In an emergency, yes. A few weeks. A month, even. After that, no.
Your vows were made to your husband. He comes first.
I'm going to come at this problem slightly different way.
Who choose to 'jump in'?
To come stay with the Grandparents & offer care?
Was there a time period placed?
Were there other conditions or boundaries?
So now I'm here 24 hrs a day after her last hospital stay. It was my choice because of feeling obligated and of her having no one else. It's tough and I have very difficult decisions to make. I appreciate you. Thank you
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.
No, you do not. Your husband and family come first.
Find a facility that will meet Grandma's needs, tell her you are not abandoning her, then visit when you can.
https://www.aaa7.org/site/476/aaa7s_10_counties.aspx
Call them and tell them that gma needs to have a "needs assessment". Get that scheduled.
Getting a social worker is a great idea.
How long ago was the Home Care denied? You may still be able to appeal that. Never take "no" for an answer when it comes to insurance. I take it gma has a Medicare Advantage plan?
If gma has assets, they should be used to pay for caregivers in her home. Or she needs to apply for Medicaid if she is indigent.
Have you considered a hospice evaluation?
Then get a hold of social worker, maybe through your gm doc. They will help you keep up with other issues. It's not a solution but it is a good start... help and time to yourself. Good luck to you, it takes a special person to do what you are doing.🙋
As the caregiving takes its toll on you, you won’t be able to give her the best care. When you are burnt out and exhausted you will eventually make some type of mistake, be it physical such as not moving her properly, or do something like miss medications or make other mistakes. You can end up injuring yourself and/or her.
It is in both of your best interest to have her in a facility where she can get around the clock care from people who have experience with the new issues as they come up and have others who can help them when a task requires more than one person. That will leave you free to visit her and spend more quality time than you can now.
It will be a hard thing to do but stand firm in spite of her objections. You deserve the rest and she needs more than one caregiver.
Good luck!
You can’t work 24/7. It would be better to actually look at skilled nursing for your granny or to have caregivers come in if it is possible (cost).
what happened to the rest of the family? You could walk away - go home, because you do need relief. Someone else in the family will have to step up.
I never liked that aviation comparison saying about putting one's own oxygen mask on before someone else's. Pretty much when the masks come down on that plane is going down anyway. The grandparents need to be placed or have other care arrangements made for them.
The OP should just walk away and let the actual kids of the grandparents' work something else out.
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.
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.
You're not stuck, you're just refusing to tell your grandmother that she needs more care than you can provide. Remind her that you have an obligation at home...your husband. Tell grandma you will do everything you can to find her the best care. Then call other family members and demand that they relieve you so that you can get a good night sleep before looking for a long term care facility for grandma. If they refuse, tell them the alternative is that you call adult protective services on your way out the door to go home.
Tough love is the answer.
You will become ill if you continue this schedule.
Get help.
Get the rest of the family together and tell them you cannot and will not continue.
This is an unsafe situation for both you and for the grandmother.
You can also just walk out and call Adult Protective Services and tell them about the situation in the home with no help and patient decline. Or you can remain in the home and still report the pt. decline and unsafe conditions with pt mobility and your lack of support to APS to begin to get the help you need.
You can also call 911 when she needs to be moved. Have them transport her to the ER and from there you can assess the situation with social services and, have them place her somewhere for ' rehab' or other reason , while the " family" is making other decisions. Do not let them send her back home.
Pilots , train engineers, doctors and other professionals are not allowed to fly, operate trains or perform surgeries etc after x number of hours without being " OFF" as it is dangerous to the passengers and patients. It is not different for you as a caregiver. However, because you are in the home, ( as it is for many many people) it is not as visible and hence goes unnoticed.
Please get help.
Nobody WANTS to send a loved ine to a SNF. But you cannot give up your life and marriage.
is bringing her into your home an option?
I certainly hope that bringing her into the OP's home is not an option.
The situation will be exactly the same only in a different location.
The grandmother either has to have live-in help or she has to be placed.
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
The line about growing tomatoes on that line of bs was awesome and also totally true. Everything you said is spot on too.
You said that the last time your mom was in the hospital she was denied home health.
From what you have said, your mom is in need of permanent placement in a facility.
Do you understand how home health works? My mom did it rehab and home health more than once. She benefited from it.
Mom had Medicare and Humana Gold Plus. The insurance won’t even pay unless the patient is able to improve.
It’s probably best to get her into a facility. If she’s in pain, she can’t just suffer. Spinal issues are serious and she needs nursing care 24/7. Not home care.
You have done the best you can. Your family needs you. There comes a time when you have to let go and let medical professionals take over. Is there funds to hire nursing care for her at her home? It will will need to be probably an actual nurse. You could try that. Maybe you come 2-3 times per wk and hire the rest. If not, then a facility is best. You can visit everyday. If she’s able, take her to lunches or dinners. Make her room as comfortable as you can. I hate to say it, but it’s possible she may deteriorate faster in a facility. However, she could enjoy being around others her own age too. It could go either way.
You have given your all, now it’s time to change things so she gets better care and to retain your own life. Love her all you can, but sometimes love is doing difficult things. Good luck.