My mom is 63 years old. In March 2023 she opened up her home to me when I broke off my engagement. I started to help with some of her caregiving. In December 2023 I ran away for a week (my third mental breakdown of that year) because I got overwhelmed living with her, processing my broken engagement, grieving my Dad who was in his final stages of ALS, and balancing my full-time job. While I was gone my mom landed in the emergency room and then got discharged to a skilled nursing facility (SNF).
In March 2024 I took her out of the SNF AMA because her diabetic blood sugar levels were all over the place. I tried caring for her in her home but I quickly burned out within one month and things got ugly. I don’t have the patience or empathy to be a caregiver. We took her back to the SNF for long-term care — because everyone I’ve talked to says she needs 24/7 care.
She is wheelchair bound due to a spinal surgery in May 2022 that I don’t think she ever fully recovered from, as well as neuropathy in both legs. She needs assistance to get in and out of the wheelchair. She needs help with ADLs. She is a brittle diabetic and has some cognition decline due to several mini strokes. She has experienced several falls in the last approximately five years. She is incontinent and has a catheter.
It seems as though her condition has declined since she’s been in the SNF since they pretty much keep patients bed bound and discourage them from getting up. She has always talked about how she never wants to go into a facility.
I feel like shit, super guilty, and regretful already. I wish I was more selfless. Everyone makes a big deal that she’s “so young” and already in a nursing home. Which yes, has some validity. Yet looking back I think she has been unsafe and struggled at home for several years.
How can I make the best of this situation and support my mom? (Yes…visit the facility…be an advocate…I already know all that and do all that and still feel terrible)
It also sucks because they don’t really easily let her out of the facility, so it feels like any dreams of travel or a day at the beach are dashed.
The biggest hindrance of her coming home is the mobility issues. Just today I received a call from the SNF that she fell and hit her knee trying to get out of bed.
You aren’t happy with the SNF. Have you looked to see if there is an alternative facility that would get your M out a bit more? Being kept in bed is obviously the easiest and safest thing for the facility, but it is hard for you to face. It sounds that she is never going to be happy and able to get around, so there is no easy answer.
If there is no way to improve the situation for your M, perhaps the best thing is to concentrate on your own ability to cope. It doesn’t help anyone for you to suffer as well. Have you thought of seeing a counselor? Perhaps you can ‘make the best of this situation and support my mom’ by being a ray of sunshine when you visit her – with less guilt and a happier interesting life to report. Is that possible? I’m sorry if it sounds trite, but this is really really hard.
Everything Margaret said is right, you need to live your life, I'm 61, if my kids where in the mist of this caregiving journey with me it would break my heart, to know that they were going through what I'm going through at 60 when they should be living there life, building there carrer and family.
I've told all my kids , don't take care of me when if I ever cant take care of myself, now when my mind isn't fogged up with medical conditions and pills, and pain. I will not do that to them. I have a feeling if your mom was healthy she might of thought the same thing.
So follow Margaret advice. If you have a family history of these things in your family you have to take care of yourself even more than an average person. You can't take care of yourself caregiveing, it sucks the life right out of you, mental health hits rock bottom, then physical health.
Best of luck, I hope we can help you
Welcome to are forum.
Please do not feel guilty or blame yourself in any way. You didn’t cause any of it. Your mom knows that too. If you can visit her and be her advocate that is a blessing.
The thing here is that your mother doesn't want to be in extended care facility. That however is no longer a choice. You need to let her know that what she WANTS now isn't possible. The two of you can mourn this, but you should not make the mistake again that you already made once by signing her out AMA. To be honest, I doubt you would be ALLOWED to do so again; the situation would be reported, and your mother would be given into the guardianship of the state. Were you to try to do this again, you would likely be issued a restraining order.
I am as sorry as I can b that your mom, at her young age, is in such dire condition. And I am sorry you must stand witness to her illness, to your father's and that you must suffer along with them. You have my utmost sympathy, but to interfere in the manner you suggest would be an awful mistake, adding to the suffering of everyone involved. It is time to get on with your own life and be a faithful visitor and emotional support to your mom.
Diabetes even if you do everything correctly wreaks havoic on a body. Even those with diabetes #2 who get it later in life have health problems. This is not your fault. Mom is more care now then anyone can give her. You need to hold down a job to support yourself. Your future is important.
I would ask the NH if they could provide Mom with a geri-chair sonshe can get out of her room. At Moms AL they hadca few residents in these. Got them out into the Common area where things were going on. Better to sit in there to visit than Moms room.
As other members have stated, really sad it has come to this at her young age.
Uncontrolled diabetes is a killer. My brother in law died at age 47, because he didn't take care of himself. He left two young kids. All the more reason your mom needs professional care.
This is too much to handle at home .
Mom’s needs are a lot . I think she’s not able to leave the facility with you any longer .,You could take her for a walk outside in her wheelchair around the facility grounds , or sit with her outside , bring a picnic lunch to her ( instead of the beach ) .
A lot of facilities by me do a Luau each August , they rent a tent and set it up outside . They also do July 4th bbq outside .
There are other young people in facilities for various reasons .