LilyLavalle Asked January 24, 2024
Managing mom’s home hospice care. Now I have medical problems of my own. What to do?
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Plus what can come back positive one time may very well come back negative the next.
It did come to a head when my daughter called and was in the hospital due to a kidney infection and then told she was septic. My MiL could not have cared less. All she cared about was staying in her home with me there to wait on her. She was informed that I was leaving and she had 2 choices, stay and be placed, or come to my home and have family around to help, It was forced when hubby flew in and told her she was coming with us. She did everything she could to put off the move and never ever asked how her grandchild was doing.
The trip was rough, and once I was home she refused to do anything for herself. She made sure to make us all pay for her displeasure at being forced out of her house. As much as I am sorry that it came to that, my family had to come first. She died just short of 3 weeks at my home, and the whole time I was caring for her, it was all about her. So yes, unless dementia is involved, I believe that some older people tend to think we are there to be personal servants and are not entitled to have lives of our own, they can't see beyond their wants and needs.
Your MIL (and husband) were VERY fortunate to have you, and you went above and beyond. God bless you, and I’m sorry for your family’s loss.
What happens otherwise? Well. You've withstood all mom could throw at you so far, but that changes when you're sick yourself. You will become more fragile, perhaps sicker. Mom will still be mom and, to put it bluntly, she won't care. She's shown you that.
Change your phone to whatever settings you absolutely need to keep it from blowing up with frivolous demands from other people. Inform others what you're going through, and ask them to be understanding that you have to step back from mom.
Changing hospice providers seems like more work for you to do, and it has doubtful benefit for mom. You checked into all that stuff before you hired this company. So forget that.
Simplify, simplify, simplify, and don't be so worried about mom. Easy to say, right? But it's good advice.
Good luck, and I hope your health issues will be easily managed.
My mother used to tell me how lucky I was to never have had medical issues like SHE had her whole life. Except I was the one WITH the medical issues and surgeries and SHE was the one, at 95, with none. She considered a cyst removal on her wrist as a teen a major surgery, and clearly remembered it even with advanced dementia. Her problems were major and mine and my husband's were minor. When dh needed a liver transplant, she told him he really didn't and to just forget about it, the doctors were mistaken.
Stop jumping thru hoops for her and start doing so for yourself. Sending prayers that the testing shows no major disease at play in your body. Best of luck
This was mom’s mom btw.
It does not matter whether her self centeredness comes from the disease or who she has always been, you have a right to take care of your health.
It might be time to place her so you can put yourself first. Consider applying for Medicaid if she does not have assets to pay for long term care for a long time.
I wish you all the best and hope your condition is easily treated.
And Alva, I’m filling out the paperwork today to see the specialist. I don’t believe in putting stuff like this off.
@sp I do think it’s been the stress of mom causing this. I lost over 50lbs (intentionally) in the 14 or so months before mom’s hospice, and I had a physical where my bloodwork was perfect. Then I ended up in the ER 2 weeks later, when I was providing 24/7 care. No coincidence there.
Several people have suggested I change hospice providers. I asked everyone who had used hospice that I knew irl before hiring this company, and no other agency was ever in the running. They’re considered the BEST.
But I told the social worker my plight today and she doesn’t even want to broach it with mom, although she has a visit with her today. I told SW I would NOT be providing weekend care anymore. She tells me I have to make arrangements. I didn’t expect her to find the care, but I swear, she’s AFRAID of my mother! WTF!
You are also talking to the same mom you had all your life, so only you know, Lily, how selfish she was in the past. Some people are radically changed with aging, but most die as they lived, either very concerned for others of not until the brain is well and truly broken to pieces.
I think you are right this part of this is just "your mom".
But man, it must hurt now.
It is YOU I am concerned for. Doing the steps now myself with "a spot of bother" to see what is what and what steps to take, and it helps so to hear that anyone cares. No one can really DO a darned thing about it, but just to hear someone cares is quite honestly such a comfort. I went through cancer of the breast 35 years ago, and I remember now what a comfort my co workers were. Everyone helped with their words and I learned that others had faced down things I hadn't imagined including childhood cancers. I remember the staffing fellow, Michael running out and saying "You're gonna be fine. Once you get to surgery and then this and then that and you sink your teeth into it, have something to DO, you will be fine. But the waiting room is awful".
I so remember that. The "Waiting Room". It is definitely the worst room in the house. I am going to think of you and hope for you. Please let us know as you go. Update us.
And as to Mom, well, she is what she is,and at some point you will want to get mad at SOMEONE so let it be HER. Just put your hands on your hips, stamp your feet hard and say "DID YOU HEAR ME? I said I MIGHT BE SICK. And I gotta wonder who will give a HANG about YOU when that happens, woman!"
Best, Lily. Keep us posted. I hope this is a scare that turns into nothing. But it it is something you are in on it quick, and these days so much can be done with medical issues.
You ARE going to have to know what you can and can't handle with Mom now.
And if your mom has any dementia, it is in fact "the disease" as people with dementia do become very self centered, and narcissistic as I witnessed first hand with my late husband.
Please take care of yourself and if that means cutting back even more your time with your mom right now, well so be it.
Only you know if your mother is acting self centered and selfish because that is the way she is or if it is because of her mental decline. I think if you sit down and think about your upbringing and your mothers behavior and treatment of you and others before she was old, sick and dying you might find your answer to this question.
Based on her taking two seconds before she started going off about her own sh-t I would say that today mom is only focused on herself at this point and that means she doesn't care if your caring for her kills you as long as she gets what she wants which is to stay at home and be taken care of 24/7.
On the plus side it is awesome that the care givers are calling you and not your mother to let you know when they are running late, etc. You do everything but mom still wants to be the head honcho and call the shots from her bed. Sorry mom, not going to happen. Plus having to run everything damn thing by her must be exhausting too.
It sounds like mom needs to hire a weekend aide to come in now to care for her as you are going to have to step back more to take care of yourself.
I know moving her to a facility is your last resort and I truly hope she passes before her money runs out but you have been keeping this crazy hectic pace of taking care of mom for 5 months and something has to give. Better her run out of money sooner if it gives you a break on the weekends. Your body needs time from working, taking care of your own family and all of moms constant and incessant needs to rest and regroup.
I hope you can step back and take care of yourself now, you deserve to take care of you.
Why don't you start taking care of yourself? There is a good chance that you will go before her. My mother will be 99 in Feb.
This at home care thing just doesn't work.
Your mother is spoiled, she knows that you will pick up the slack...everytime.
I don't see why continuing to do this makes any sense. Shift her to facility hospice and visit her when you can.
Take care of you before it is too late.
I think becoming self centered is part and parcel of old age, almost like all their energy is used for self survival, not that is makes being disregarded easy to take.
It sounds like it is time for a different plan for moms care.