Follow
Share

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.

Your F died with ALS motor neurone, and your M is in a wheelchair with urinary incontinence and diabetes. Both of them have had serious health issues at quite a young age. I am not surprised that you are finding it hard to cope!

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.
Helpful Answer (7)
Reply to MargaretMcKen
Report
hannahmr718 Aug 26, 2024
That makes sense — I hadn’t thought of it that way and what a positive reframe. Thank you for sharing ideas and some validation.
(4)
Report
Hanna, I'm so sorry you are going through this, and at such a young age, of course this is hard for you you at a young age have gone through so much.

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.
Helpful Answer (3)
Reply to Anxietynacy
Report
hannahmr718 Aug 26, 2024
Thank you for the welcome — this seems like a great place to connect with others in similar circumstances. My mom has said some things that made me feel guilty: “cant you stay in my home and keep taking care of me?“ (aka ready to help her in the SNF). I am proud of myself for responding that I need to create my new life but that I will always be there for her.
(5)
Report
Hi Hannah, I am so sorry for all you are going through. (I feel compassion for your mom also.) I am just a few years younger than your mom. There is no way I would want my child to take care of me for even one day if I had the health challenges your mom has. I would infinitely prefer to be visited when convenient to my child and hear about what’s going on in her life. And for her to be happy.

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.
Helpful Answer (5)
Reply to Suzy23
Report
hannahmr718 Aug 26, 2024
Thank you Suzy for the kind words.
(0)
Report
I was reading an article that we don't age Gradually But In spurts at 44 and 60 so getting sick after 60 is Normal . Some People have good genes Others do not . Both my brothers died young at 42 and 55 . Most of My friend's have Passed that we're in between 50 and 60 . We Can Not control the aging Process or diseases . If you want to switch her to another SNF Like I had to do a few times with My brother - do some research , Go on YELP read reviews that is how I found My brother an excellent Nursing Home where he Happily Lived out the Last 4 Months of His life . I would suggest getting a Therapist for some support . Or try a grief counselor since you have gone through so Much Loss . Don't go through this alone . Create your Own Life and find some support . I Did go to a great community acupuncture clinic and have Had 2 therapists . We Can Not save People But we can take care of Ourselves and Live our best lives Possible .
Helpful Answer (4)
Reply to KNance72
Report
hannahmr718 Aug 26, 2024
Thank you so much for this. I do need to address the grief.
(2)
Report
Guilt isn't appropriate at all. You didn't cause this and you can't fix it and guilt requires both that you are the CAUSE and that you refuse to FIX your mom's illness. Again, you didn't cause her illness, nor your father's and you cannot fix it. Your mother is VERY young to have to be in total care, but it sounds as though she needs it. As a very unstable brittle diabetic she needs care you cannot provide her. You have already proven you cannot, so it should not be reconsidered now.

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.
Helpful Answer (4)
Reply to AlvaDeer
Report

My mother spent four years in a nursing home, a bit older than your mother, but also at a relatively young age. I hated 100% of my visits there. We were blessed to receive good care throughout, but it didn’t make her want to be there or us as family want it for her. I learned sometimes life throws things at us that simply have no fixes, no one’s fault. Giving yourself the gift of acceptance is an important step. Fully understanding that you cannot fix it, and it’s no one’s fault is so helpful. I went in the nursing home each visit with a new joke for mom, and she’d laugh. It was my way of attempting to bring something light to a dreary day. Train yourself to be positive, even when you’re not feeling it, and know down to your bones that you cannot fix this. I wish you both peace
Helpful Answer (5)
Reply to Daughterof1930
Report
hannahmr718 Aug 26, 2024
Acceptance…and peace…
(3)
Report
Is Mom a juvenile diabetic? My GF was and by 50 had a heart attack by 60 lost her leg from the knee down because of a sore that would not heal on her foot. By 63 her kidneys had given out. Could not do regular dialysis because her veins would collapse. She went on hospice.

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.
Helpful Answer (1)
Reply to JoAnn29
Report
hannahmr718 Aug 26, 2024
What’s a juvenile diabetic? I’ve never heard of a Geri chair I’ll look into that.
(0)
Report
See 1 more reply
Poor mom. She would need a LOA (Leave of Absence) okay from the doctor to be able to leave the facility (probably won't happen) even for a few hours.

As other members have stated, really sad it has come to this at her young age.
Helpful Answer (3)
Reply to cover9339
Report
MargaretMcKen Aug 26, 2024
We can all thank you, cover, for this helpful post.
(2)
Report
Yes, you made the right choice. She needs diabetic wound care. She needs catheter care. She needs all sorts of care that ltcs are set up to provide. You are not selfish by ensuring she gets this care, no, quite the opposite.
Helpful Answer (6)
Reply to PeggySue2020
Report
hannahmr718 Aug 26, 2024
Thank you Peggy!!!
(1)
Report
Your mother is young in years, but she is very unhealthy, and she's had a number of adverse health events. No one person can adequately care for someone with so many issues, so there is no reason for you to feel guilty. She belongs in a place where she can receive 24/7 care from professionals who have a team behind them and who go home every day when their work is done for the day. So, if you are feeling guilty, please try to look at this from a rational standpoint. She needs to be where she is. Taking her out, even for a day outing, seems like a bad idea with her many care needs. Anyone who would try to shame you because she's in a nursing home is so ignorant they don't even merit a response.

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.
Helpful Answer (2)
Reply to iameli
Report

Yes you did the right thing ,
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 .
Helpful Answer (1)
Reply to waytomisery
Report

Hi Hannah - My mom had a stroke last year at 66 (I’m 42) and she now lives at a nursing home and it is hard to watch her go through it all. I feel for you in your situation. Message me if you want to chat and also as others have said, taking care of yourself is so important too, and when a parent has multiple health issues they need that facility level of care. Try not to feel guilty! I second the suggestion about therapy for yourself, I started seeing a new therapist recently to process my feelings on everything and she helps me feel more normal! Also a good therapist will help you with tools for a better life. Hugs!
Helpful Answer (2)
Reply to TiredofAdulting
Report

Ask a Question
Subscribe to
Our Newsletter