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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https://www.agingcare.com/discussions/an-excellent-example-of-why-home-care-doesnt-work-485569.htm
I see this a lot in my line of work even with people who don't have dementia. The world of these people have shrunk to a point that all they have is their illness and their reality that they are not going to improve. I have a sister who is currently in a rehab since 2020 and everything is about her. She was like even from a young woman.
If mom is in a facility, she is in safe hands. Please take the time to follow up on your own health needs, doctor's appointments and take care of yourself.
I went back and re-read your question. Get someone of the weekends and take care of your health.
Your mother is receiving hospice care. So she's got some serious illnesses. Not speculating of illnesses. Not 'maybe' or 'could be' or 'probably not', but bad off enough that hospice is on the scene. So if she's more concerned with her own ailments than with yours, it's understandable because she's actually in hospice care.
You care for her on the weekends for five months now. Get weekend help then. If she can't afford it then she can go to a hospice facility.
As for people telling you that it's the disease talking, well you'd know your mother better than anyone wouldn't you?
Was she snide and verbally abusive to you before dementia? If she was then it will only get worse with it.
Bingo.
At first you think it's very upsetting and scary with their bizarre behaviors.
After awhile, you see the laziness and selfishness spew like a volcano.
Not your fault she got old. We all get old and die. Nobody gets out alive.
What gets me is the good people die young, and the nasty ones seem to live forever. Is this a cruel joke the Universe plays on us?
You know what they say. Only the good die young.
Lily , you are burnt , I’m so sorry you are stuck . It stinks when everyone thinks LO is competent but as you said she has lost insight regarding her care needs. And of course she is reluctant to get tests for dementia. Is it possible for you to place her ? Do you have POA? She is bedbound correct ? , if you call APS or County Area of Aging maybe they can help ??? Can hospice help you at all with placement ? Idk. Try anything I guess.
I wish for your sake your mother to get placement if possible.
Mom is competent? Then let her, with SIL's help, arrange her own care. Step aside. (Do you have POA? Resign).
What SIL thinks about Lupus is neither here nor there.
What you NEED is what counts here.
This means I would have to bring mom to a competency evaluation by ambulance. She will not go. And I would bet my life she would pass it with flying colors. She’s witty and can talk about the president and current events with the best of them. She just has no insight on her current health situation, planning for the future, and how her care is gutting the lives of others (me and my family).
She says “if you’re going to put me in a Nursing Home just shoot me”. End of conversation. When I try to calmly explain how untenable things are becoming she literally turns her head to the wall and will not speak to me.
Also, my SIL came Sunday. I told her about my potential lupus diagnosis and she dismissively said, in front of mom, “oh my sister has lupus. It’s not that big of a deal. She still works full time.” I was trying to let my mother know that all this extra work is putting a strain on my health. But now she thinks it’s nothing.
Anything my SIL says is gospel. Which is another thing that bugs me. I take care of everything, but I’m the one she won’t listen to. SIL pops in for a few hours once a month and mom hangs on her every word. Or maybe it’s that SIL is saying what she wants to hear.
It’s so much less stress on the family now that the two of them are in a nursing home.
Think about it, it’s probably time.
Then last night, my super reliable M-F Aid called out for the first time ever, at 7pm - the time she was supposed to be starting. Luckily my brand new weekend aid said she would cover. (I can’t drive out of town on a week night in the middle of winter, sleep over moms and then make it to work the next morning).
I was irritated but holding it together and trying to look at the bright side. THEN today my M-F person who was now going to do Tues - Sat said she has to leave first thing in the morning on Saturday and will not be there all day or night Saturday, leaving me with Saturday and Saturday night myself. AND were having a birthday party for mom Sunday (planned before any of this happened). There’s more, but I’ll leave it at that. I’m so done.
The good news about autoimmune disease is that today’s research and treatments are making it easier for patients to cope and live longer lives. As long as you take your medications and treatment and follow your doctor’s instructions, you will do well. I know that we all go through our daily stressors, but you should try your best to avoid stress as this can trigger your autoimmune disease to act up.
Wishing you well in your journey with this disease.
Even calling, vetting and hiring more help is a lot of work. I am already very tired. My original thread starts back in August when mom was released into my care for home hospice.
Even if caregivers made a promise to never place the loved one in a facility, they had no idea what would entail. The caregivers are driving the bus and need to make decisions for themselves as well as the loved one. It’s very smart to move them to a facility after rehab. It will be very difficult to do that after they come home, whether it’s your home or theirs. The Medicare website lists ratings of nursing homes so you can know you’re putting them in a good facility and know about the care they provide. As a 24 hour caregiver you are doing the work that at least two shifts cover. Contact your Area Agency for Aging to learn how to finance care in a facility.
Have you looked into Hospice providing 5 days of respite somewhere?
I thought my situation was going to be different because my mom is completely bedridden. But it’s not.
Even though we have an excellent hospice provider, they have no inpatient facilities at all, and provide no in home care, other than through a sister agency that charges $39/hour, just like all the other homecare agencies in my area.
In the meantime I have my medical appointments to follow up on while I continue to work full time.
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.
I doctored at The Cleveland Clinic’s Rheumatology Dept. They told me that a virus or traumatic event could trigger the immune system to respond to attack an invader that does not exist. Once triggered it keeps attacking this imaginary enemy, trying to keep you safe but instead harming you.
So the mental and physical trauma of taking care of your Mom is certainly enough to trigger an autoimmune disease. I imagine your doctor will advise a change in care for your Mom as that is probably the triggering event.
Autoimmune diseases are no joke, they can be very serious. You will have to take care of You for a change. Best of luck with this. Please let us know how you’re doing.
In reality, my daughter got so sick I brought her to the ER, so it was an exhausting day of hours at the ER Sunday (just like the old days with mom!). She’s ok btw. My husband cared for mom. I didn’t get much sleep and had to go to work early Monday.
Then Monday night my caregiver was 2+hours late. My brother covered. But I think my caregiver wanted the night off (she was having legitimate issues, and never calls out sick, so it wasn’t unreasonable). But I just couldn’t do it, and mom doesn’t want my brother staying overnight.
The stress just never ends with home care. I was holding my breath waiting for her to come. So I know why everyone says homecare doesn’t work. But NOW mom is showing signs of decline. So I don’t want to go through the upheaval of the emotional drama and physical move when the doctor is implying she may have 2 months left.
I have to stick to the promise I made to myself that this set up will end at the end of March, one way or the other. In the meantime I’m in the process of hiring another caregiver, so I will do NO nights and 1/2 a weekend day per week.
More than 30 years ago I high ANA, and they thought I was developing lupus or another autoimmune. Through a health food store owner's information (internet was not available like now) I changed diet to more whole food, less junk, and started meditating to alleviate stress. My ANA came down, but I had developed auto-immune thyroid disorder and Raynaud's.
8 years ago I developed auto-immune arthritis after my stress levels became very high again. I thought I could just plow through it all. I went through many chemical drugs and 3 biologics which either stopped working or didn't help. I envied those who were helped long term by the drugs!
If you are testing positive for markers now, it's a great time to consider changes to help your body, and possibly turn some of the stress around if possible. Medicine knows so much more now it's amazing.
Last year I landed on a book called Goodbye Auto-Immune Disease, Brooke Goldner MD after a webinar (hope it's okay for me to say this in this forum) and thought I have nothing to lose, and everything to gain; and I didn't eat off plan for 6 weeks. To my amazement the protocol helped me! I wish I had found it in 2019 when it was written.
We don't get this time back..... so cherishing life I have now. Wishing you great peace and hope! Best of luck and prayers as you journey through with your mom!
So sorry about your health!, will send a prayer.
I agree with others, it doesn't matter what the exact cause of your mother's behavior is, what matters is your health, big time. Even though she's in hospice, she could live a long time yet, what will that do to your health? Consider placement.
My dad, 92, is like your mom, long story but we had huge fight, he lives far away, being cared for and we've gone mostly no contact, I think this has saved my health/life.
Take care of yourself in big way NOW. Your mom lived her life, take deep breath and let go.
❤️
Anne
1. Was your mom always like this? If not, it is likely the disease, or a reaction to knowing she is at the end of her days. There may be strategies you can use to ease her anger, frustration, self-centerness, etc. If she has dementia, consider using the Alzheimer's Assoc. hotline for help.
2. If your mom is in hospice, do you have any idea of the prognosis?
3. Is there an inpatient hospice facility that she could go to?
4. If your mother was your child, what course would you take?
5. Are you in a caregiver's support group? If not, would you consider one? Some are online.
6. Given your mother's situation (end of life), moving would likely be traumatic.
7. Are there any agencies in your area that could provide respite for you?
8. As others have shared, and is wisdom of the ages, taking care of yourself is imperative, in order to care for someone else.
9. Strive to not take your mother's (or anyone's) behavior personally. We are each on our own journey. As a very wise teacher shared: If we were in that person's shoes, we would be doing exactly the same thing.
I am learning that I have to take care of myself as well. My friends and my doctor keep lecturing me on that. It is hard.
I wonder if your stress is actually causing the auto immune disease to flair up. I saw that with my mother when she was in an abusive marriage. She developed ulcerative colitis and had to be treated for years. It cleared up on its own shortly after she left my father.
Like with me, the stress may have set you up to develop conditions that may not have appeared on their own.
You have to take care of yourself. As others have said, whether or not your mother’s behavior is from the dementia it doesn’t change that. I know it is not easy!
Please try to take care of yourself and I am trying to do the same!
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.
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.
You have your hands full taking care of her. You have just received a "wake-up" call. You need to put more emphasis on your own life.
I would put in place everything that your Mom needs if you were not around...and start focusing on what you need to do to get your life in order.
As for the other people who are texting and calling, is it just for status update? Unfortunately, no phone call is under a minute and to be at a minute, the call seems abrupt and not satisfying. How about a group text or a group email once a day or every other day or once a week?
As for your Mom's complaints, consider that there is nothing for her to do, other than lay in bed and observe the world around her. She might even feel that she gets more attention from you if she complains rather than compliments. Unfortunately, there isn't much you can do about it, since she is in hospice.
Please take care of yourself. Who will take care of YOU?
Even though your recent news is disturbing, it brings to light that changes are in order.
Use this situation as motivation to look for alternative options of care for your mom.
You cannot change the way your mother views this situation or anything else. Focus on what you feel is important.
Wishing you peace as you move forward during this difficult time.
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.
so sorry that you are going through this stress along with now your new possible medical issues.
I see that you have posted on some of my posts so may know my situation too. So I will comment on this aspect as others have:" 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?"
For a few months, I was debating this in my head regarding my dad. But lately, I'm starting to realize that its immaterial as far as what I do, and so it should'nt make a difference. So now I'm starting to realize and plan out that, since he is my father, I will do what I can reasonably do and want to do to help. However I cant go beyond that and have it negatively affect my life including being a husband, a father, and have a career. As you can see from my posts, I'm still struggling with the implementation part.