Managing mom’s home hospice care. Now I have medical problems of my own. What to do?

Lily, May The Lord touch your body.

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.

What difference does it matter for the reason? The bottom line is your mother is a self-centered narcissist and could care less about anyone else.

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.

Lily I am sorry to hear about your recent health problems. I have to wonder if the 5 months you have been doing all this care giving for mom contributed to your issues or has this been something you have been dealing with for quite some time.

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.

Lily I'm rebuking in Jesus name whatever that test indicated and when you get the final results it will be found to be nothing.
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.

Yes, you are talking to the disease.
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.

@funkygrandma I appreciate you rebuking my test results in the name of Jesus, that felt very powerful. Unfortunately, I got MORE test results today and one of them is positive for a Lupus marker, still not losing hope though because other Lupus markers were negative.

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!

Unless your mother can pay for 24/7 care at home it is time to consider placing her in a facility.

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.

I'm with Dolly.....what's the difference why mom is acting this way? She's acting this way and YOU need to stop the caregiving you've been doing for her and use moms money to hire help! Period. Strictly limit your exposure to the toxicity now, which I personally believe to be a combination of lifelong selfishness and dementia which is THE worst combo EVER. And take care of YOURSELF now.

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

I hope you can find a good place for your mom. You're way beyond taking care of her at home now. You need to take care of yourself first.

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.

I took care of my MiL for almost a year, most of it at her home half the country away from my home. I knew she was selfish and self centered since I married her son. However, when we received the call she was on hospice and could no longer live on her own, and only had weeks to live, hubby and I discussed it that I would stay with her in her home (she refused to leave.) When weeks turned to months, I had enough and had a plan in place with hubby to move home at the end of November.
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.

Lily, I'm still rebuking whatever you have going on in your body right now. A positive lupus marker does not mean that you have lupus, nor that you will ever get it. In fact there are a number of other non-lupus causes that can trigger a positive result, like infections and other autoimmune diseases, or you are one of the 15% of normal people who have positive antinuclear antibodies without any disease.
Plus what can come back positive one time may very well come back negative the next.

Hi Lily,
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.

Lily, here's the bottom line.

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.

Lily,

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.

Lily, why are other people expecting Mom to answer her phone? She is in Hospice!

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?

If she has dementia, how could you think it isn't the disease you're talking to?

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.

This sounds like my mom....even 20 years ago. Yes, it could be the disease talking, or it could just be the way she is. Either way, please consider putting some distance, mentally and physically from her and take care of yourself.

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.

Lily, you are not alone. My mother lives two hours from me and has help but I still need to be her secretary since she too doesn’t answer the phone, etcetera. I still spend a lot of time doing things for her, but it is nothing like having her live with me. I still just found out that I have an ulcer. I know stress does not cause that alone but it can lower our defenses enough for problems we would otherwise fight off to develop. You are under so much more than I am! I haven’t told my mother because she would act in the opposite way and start worrying too much about me while still making the same demands on me anyway. Her constant concern and questioning would only add to the stress.
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!

Some things to consider:
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.

Dear Lily,
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

Thank you all for your replies. I just got caught up on reading them. As a birthday present my daughter gave me Sunday off, and the paid caregiver stayed Saturday night, so I was supposed to have the whole weekend off!

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.

Doctor and hospice told my hubby and myself they didn't expect MiL to last two weeks. Hence the reason for me staying in her home town. Well that two weeks turned into almost a year. No one knows how long someone will survive and doctors can only guess. Your health and your family is first priority, She needs to be somewhere that can care for her 24/7, don't wait.

I have several autoimmune diseases myself. The first was triggered while taking care of my husband at home when he had terminal cancer.

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.

Hey Lily,
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.

LilyLavalle: It is imperative that self care be your priority.

Thank you all for your kind replies. I'm so mentally and emotionally exhausted that I can't face making the change right now (applications, finances, and the showdown with mom). I'm hoping that getting this second weekend person, so I have NO overnights, will give me enough respite that I become ready to face the next chapter in this saga.

In the meantime I have my medical appointments to follow up on while I continue to work full time.

Lily, I think we all need to point to your thread when we tell others to do placement directly and not "try" home care.

Have you looked into Hospice providing 5 days of respite somewhere?

Get respite time for yourself, like a Saturday afternoon, and no shopping for Depends. Some facilities even offer a short respite stay for the one being taken care of. I once presented a self care workshop for caregivers. In my research I found an article in the Journal of the American Medical Association. In a study of caregivers, all other things being equal, have a 63% higher mortality rate. That shocked me as well as the attendees. A caregiver is jeopardizing the care by dying before the one they are caring for. That means self care is tantamount for health and sanity.

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.

I think it’s a bit of both . In any case , I would use your new medical problem as the reason to now place Mom in a facility . Tell your Mom it’s doctors orders.

She can only focus on what concerns her. She can't comprehend that you may have needs - of any kind. Please consider getting others involved in ways that help you. Also consider checking out a support group for whatever your autoimmune disease you have. Folks living with your health issue can give you the best advice on what works.