Managing mom’s home hospice care. Now I have medical problems of my own. What to do?
Most of you know I’ve been managing mom’s home hospice and providing weekend care for 5 months now. I was literally sittIng on the end of Mom’s bed yesterday when I got the call from my doctor saying that I tested positive for an autoimmune disease marker.
Mom heard every word of it and I filled in the blanks, explaining that it could indicate lupus, MS or some other autoimmune disease (I later found out it could also be cancer).
She acted concerned for about 2 seconds and then launched into a complaint about her aid calling ME yesterday to say she was running late instead of her. The reason everyone calls me is mom doesn’t answer her phone, check her texts or reply over 90% of the time.
People keep telling me I’m talking to the disease, but am I really? Or is she just a selfish person who truly doesn’t care about me, and only sees what I can do for her? I’m starting to think it’s the latter.
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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 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.
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.
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.
Who is going to take care of your health issues if you don't? Medicaid? The state?
Your Mom has those options. You don't.
Are you determined to be destitute in your old age?
Please start taking care of yourself. Otherwise mom has no competent advocate.
Your positive test result may or may not be something that will develop, but stress could cause that, or something else to ultimately happen to you.
Just like in an airplane emergency (the "oxygen masks falling from the ceiling" scenario), you should take care of yourself first, before taking care of someone else.
Best wishes.
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.
So sorry to hear you are going through this! Yes, Alzheimer's can yield more self-centeredness on it's own, even if that wasn't present earlier in life. My mom appeared much more self-centered in late 2018 when the Alzheimer's had progressed to where she needed to move from her townhouse. It must have been frustrating for her though to not be able to manage the everyday any longer when she previously had done so while working and also for over 20 years in retirement.
She refused to move near my brother, or me because there wasn't enough to do, and she didn't want to be alone while I worked all day. We found a nice place for her to live, but it is still 2 hours away!! She later became totally wheelchair bound and needs a Hoyer lift for transfers and had to move to Skilled Nursing Facility during the pandemic. She refused to wear a brace the orthopedic doctor fitted for her and can no longer stand at all. Now she's in hospice care.
I too had problems with autoimmune disorders, and then psoriatic arthritis for the past 8 years. My mom showed no empathy. Also she talked about my brother's wife's autoimmune issues, what she was doing wrong, and how she was not working because of pain, while he had to work so many long hours. It was as though she totally lost the ability to care about anyone but herself.
I was told stress can make autoimmune disorders worse, initiate them, or can trigger a flare. It is very stressful, and we need to care for ourselves so we can continue to care for our loved ones. It may be time to look into a facility for your mom, but only you can know that. It also has it's own stresses.
My mom has become nicer again over the past year. I had learned oave these years to enjoy the good, accept the bad, not correct her misconceptions, not ever say that anyone was dead, and redirect her line of negative thinking where I could. It's almost amazing how good we can become at talking with someone with dementia. Sometimes I hear old junk from the past, but her brain is broken and in the end we all need love more than anything else, ourselves included. It's good to be good to yourself on this path.
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.
How would she have reacted to this information 15 years ago? If it's different, then of course it's the disease.
You need to find support for yourself elsewhere. A sick person whose brain doesn't work properly is not going to be able to provide it.
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