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Mom was an only child (not spoiled materially because they were poor, but got a lot of attention). She was married to my father for 43 years and he adored her, doted on her and always did her bidding. He died in his 60s of a horrible disease in a nursing home. Mom ended up with an older “boyfriend” who absolutely worshipped her for 15 years. He died right before Covid. She has chronic pulmonary disease and my husband and I stepped in to help, doing essentially everything for her even though we live in another town. After several bouts of pneumonia she had gotten worse, and we have catered to her every whim. We wanted to make her life nice because we felt her time was short. Ultimately, we allowed ourselves to be put into the position of fulfilling her every need. Going way out of our way to buy things for her, bring her places, etc., letting her boss us around doing chores and even lending her money because she led us to believe she was just getting by financially. Now that she’s very ill I found out she has money, because she added me to her accounts. But she absolutely has refused to hire help. I have a brother who is local who will do nothing. She is being released into home hospice Tuesday with me as her primary caregiver. I did hire an aid for when I’m at work - didn’t give Mom a choice (I also have young adult kids still at home). Now she is literally sitting up in her rehab bed, as energetic as I’ve seen her in months, giving me orders, wanting us to buy things before she gets home, move big furniture, and make space without getting rid of any of her hoard of stuff. My husband was literally putting up drapes in her house while mom was giving me my marching orders. I KNOW we created this situation ourselves by not setting boundaries. I’ve read a lot on this forum and received counseling myself. Even when I was much younger every counselor I saw either said cut ties or distance myself from my very dysfunctional family. But now she is actually dying I want to be there, but I’m burned out, resentful and feel guilty that I feel this way when I want her death to be as peaceful as possible.



PS. She is nice, humble and witty with everyone outside the family. She tells everyone that she spent her whole life caring for people, my dad, her bf and my mom, and now it’s her turn. In fact, my dad was in a nursing home, her bf never really needed care until the end when he was in the hospital. But “I” cared for my dementia riddled grandmother when I had a 2 y/o, including everything I’m doing for mom now and ultimately emptying bedpans. I did it because mom was with my sick father and brother was absent. She honestly believes it was her who did all that!
Really I’m just venting. Thank you to anyone who read all of this!

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Lily,

What kind of feedback are the caregivers telling you? Anything useful, or do they show up, do their duties and leave? Ask them about how your mom’s day to day life is going. Maybe they can help clarify certain things for you.
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Lily--a LOT of us are in situations that we know are bad--and we can't do ANYTHING to make them better. Either the patient is impossible to work with or the family balks at every consideration of making things better.

It just is what it is and we have to do all the compromising. It's not fair and it's not right, but it's just what we have on our plates, whether we dished it up or not.

Vent away. I know I do. And I also know that my opinion and concern falls on deaf ears. Literally.
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NeedHelpWithMom Nov 2023
Yep, these situations are never easy to deal with.
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Just to be clear, I am using HER money to hire 24 hour care in her home 6 days a week. She was in a facility for almost 2 months before she came home on hospice. Quite honestly, it was just as difficult, mainly because of her house, and the added driving/travel time to visit her at the facility. At least at her home I can write out her bills or wait for a repairman while visiting her.

If she could be placed and I could get rid of her house that would be a different story, but since she is still considered competent and still has money, I can't sell the house out from under her.

I guess that's why I'm continually venting. There IS no solution that is comfortable for me at this point.
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NeedHelpWithMom Nov 2023
Well, if she is considered as competent then that certainly complicates things.

I realize that this is a difficult situation. Do what you feel is best. Still, have an end goal in sight, should this become unbearable for you.

It is miserable to have to wait for the other shoe to drop before being able to set a plan into motion.

Can you tell me how she ended up leaving the facility?

Do you feel that her leaving will cause more trouble for you down the line?

Did you have a much longer distance to go visit with her when she was in the facility?

Is there a facility that is suitable for her that would be closer for you to visit?

It is good that she has caregivers with her on most days instead of you being with her all the time!
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Lily,

How much does it matter to you what your mother, hospice, your brother or anyone else feels about this situation?

Isn’t finding a solution that you can comfortably live with the most important thing?

One of my biggest regrets in life is that there were too many times when I placed other people’s feelings above my own feelings. This never works out well for anyone. Don’t become so involved with others that you lose sight of your own needs.

In my experience, I feel that it is best to be honest with yourself and others about how you feel. Then you can move forward with your plan without having to explain your every move. Ignore the negative feedback.

Your mom has money and is responsible for her own care. If you have POA, put her money to good use! Plan carefully and make alterations as needed.

Go back to being her daughter. Help her and yourself by being the best advocate possible while she is living in a facility that has a trained staff to assist her with her needs.

Wishing you and your mom all the best.
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So I guess the "solution" as far as hospice is concerned, is to bring in the wheelchair that has been in the trunk of moms car for months, and push mom around the house in the wheelchair.

This will result in her seeing how much of the house I've cleaned out, which is tons, even though I've only gotten rid of actual garbage (like 10+ year old junk mail and empty containers), and clothes that are size XXL and larger. She now weighs 96lbs.

Mom has been on a mattress that inflates in different areas to prevent pressure sores, and has a gel pad for when she sits up.

No one planned for her getting better, and I've been spending money like an open faucet paying for 24 hour care for her.

I know I'm supposed to be "happy" that she's better, but I'm extremely anxious, not just about the prospect of this going on indefinitley, but also about the 1000's of dollars she's given to my brother which will have to be answered for when we apply for medicaid.
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waytomisery Nov 2023
Listen to Barb,

It is time to tell Mom she needs to go where there is 24/7 care by a full staff , who are younger than you .
You “ can’t do this anymore “.
You should not be paying for her care either. Use the wheelchair to wheel her into a facility .
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Mom had a virtual pulmonologist appointment that troubled me. When mom came home both the hospice agency and my family thought she had maybe weeks to live. She was told, rightfully, that she did not have to take any medications or breathing treatments that she didn't want to, and she continued her morphine and benzodiazepine that she started in rehab.

Now it's 3 month later and mom seems better physically, but is getting very forgetful. The doctor, surprisingly, asked how much mom is getting up and walking each day. The answer is zero. They were talking about a catheter when she first came home. She has only stood up to pivot and use the commode. She has not walked at all.

The doctor also asked if she is doing the breathing treatments. I think he meant for her comfort (to ease her breathing), but mom has always hated doing them and no one has tried to force her into it.

So now mom thinks she should be walking, which I fear will end in a serious fall after not walking for 3 months. And she is considering breathing Tx's, which would probably be good, but her HHA is not licensed to administer them, and hospice only has a nurse or CNA there up to 3x/week. (The breathing Tx's are 2-4x/day).

I'm trying not to second guess myself about having mom go onto hospice. The truth is, if she did not require 24 hour care, she would have accepted little to no home care (like so many times before) and she would have been back in the hospital in less than a month. But now that she's "better" I feel we have done her wrong by leaving her bed bound.

I contacted the lead hospice nurse right after the doctor's appointment and expressed these concerns. She is seeing mom today. I will update you all on what the plan is going forward.

Also, another thread is discussing selling an elder's house to pay for care. I wish to God that mom would let us do that. Since she added a handicap bathroom and upstairs laundry less than 5 years ago, and (we) cleaned out much of the house, we could sell it for quite a bit in our area. It would pay for years of high quality care. As it is now, she doesn't even want orange juice bottles thrown away (they should be saved for watering plants). The point being she will part with nothing, let alone the house.
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Lily,

Sadly, your story isn’t uncommon. You feel stuck. You are stuck in your mind, just like I was. Don’t repeat my mistakes. I let things go on for far too long.

You’re going to have to visualize making changes from your perspective.

Don’t be overly concerned about how your mom responds to your changes. Focus on your needs and the rest will work itself out for the best.
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Lily, "Mom, I can't do this anymore" are the hardest words I EVER uttered. And my mom didn't understand at ALL what "this" was.

You are the only person who can take care of you and your husband. Mom has other options for care.
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I just read through this entire thread and 3 big things jumped out at me.

1. I had to laugh when I said I put my brother on the schedule for 1 day and one night a week. He came 3-4 times for about 1.5 hours each.

2. We went through contortions trying to get help to work around mom’s daytime aid, who would only work 6.5 hours 4x/week. Mom said she was “like family”. As soon as I told the aid there could be no more cash payments that was it. Even though I gave her notice and a small severance check she never even texted goodbye to my mom. (I guess she was like certain members of my family).

3. I said I should get 24 hour help in before other family started dropping out. Well I got 24 hour/5day a week help, and they still dropped out.
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waytomisery Nov 2023
Now you go to plan B ….a facility.
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I’m so sorry you have so much on your plate . Please consider a facility after the holidays if not sooner . Start looking now . Mom will just have to deal with it . As far as the many phone calls. Let them go to voice mail . Respond IF necessary . Try to keep it at one phone call to Mom a day .
Perhaps hire a company to clean out the hoard. Good luck .
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I know this is the direction things are going, but @sp196902 you said it yourself in an earlier response, it's hard to have the conversation saying, "I brought you home to die in the comfort of your own home per your wishes, and since you aren't dying...."
I think it's going to take the financial situation getting more dire, as was also commented below, either that or mom stops being able to toilet herself.
Either way, I don't see her being placed until after the first of the year.

Later Edit: I have heard several people mention wonderful end of life hospice care homes. Does anyone know what states these are available in? I am using what is considered the best hospice company in my area, and they do not have end of life homes.
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PeggySue2020 Nov 2023
Only some hospices have them. My sister was planning to transfer my dad to a new one that had that option, but then he died.
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Lily,

I’m so sorry that you are going through all of this. I know firsthand how hard it is.

Believe me when I say that you can’t be everything for everyone else, not even for your mother who is dying.

Value yourself enough to let go of feeling of like you have to be fully responsible for your mom. It took me far too long to learn this lesson.

I had so many conflicting feelings when I was my mother’s caregiver. I made foolish decisions that caused myself and others so much grief.

My mom ended up needing more care when her Parkinson’s disease progressed.

I quit my job to become mom’s full time caregiver. I regret that I didn’t continue working and not placing my mother in a facility.

I was so blinded that I couldn’t even see that I was adding frustration to my mother’s life. Deep down she really didn’t want to be a burden on me.

Mom did end up going into a lovely end of life hospice care home. She received excellent care from her nursing staff and aides.

A social worker was available for her and the family. Clergy is provided by hospice as well.

The family was relieved that she was cared for 24/7 and my brothers and I were able to return to being her children instead of burned out caregivers.

You’re not doing yourself or anyone else any favors by caring for your mom while being burned out.

Your mom and others can see your exhaustion and it becomes uncomfortable for everyone.

I don’t believe anyone is capable of being their best when they are burning out, no matter how much they want to be their best.

My mom felt as trapped as I did. How could she come to terms of accepting going to a facility if I insisted on caring for her?

I taught my mother to become dependent upon me by telling her that I would always be there for her.

I adored my father and his last words to me were, “Take good care of your mother.”

I went overboard trying to care for mom. So much so, that she didn’t want to hurt my feelings because she knew that I was trying my best to care for her.

My mother was the rock of our family. She was never a ‘needy’ person. She had been an independent woman before she became ill.

I have done a lot of reflecting since my mother died. I can clearly see my mistakes now.

I am able to see how my mother truly felt as well, not what I thought she felt.

She told me shortly before she died in hospice that she never wanted me to give up my entire life for her and that she knew it was too big of a sacrifice for me to make.

We both cried. Our relationship had changed from the stress of me being her caregiver, an unnatural codependency occurred. It took me letting go for healing to take place.

My children once said to me, “Mom, when you grow old, we will care for you the way you cared for grandma.” I told them, ‘Like hell you will. I loved my mother and I know that you love me but I don’t ever want you to give up your life for me. Live your best life. That is what I want for you.’ My children looked at me and thanked me for wanting them to be free to live their own lives and they understood how I felt.

I hope that you will consider letting go of this responsibility of full time care. Being an advocate for your parent is a beautiful thing. Your mom will come to terms with the decision to allow others to care for her.

Take care.
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LilyLavalle Nov 2023
@NHWM You seem like such a kind an loving person. Your Mom was lucky to have you, and I'm sorry your caregiving took such a personal toll. Like you, I never want my children to go through this.

I feel that my mom WANTS me to give up my whole life to take care of her. Idk if it's partially the dementia setting in, but she has no concern for what I have given up. She's not even aware of it.

And to add insult to injury she tells everyone that she cared for her mother. She sat by her mother's bedside while she was dying in inpatient hospice. She never spent a single night at my grandmother's house, never emptied a commode, changed a diaper, anything.

I was the one who cared for my grandmother in her home when she had dementia. And I had a toddler at the time. It was totally inappropriate, but my mom wouldn't make a decision to place her. I ended up getting her placed with the help of my husband.

So in addition to just being tired, I have a big, giant dose of resentment. And the fact that mom constantly talks about helping my brother financially while he does nothing is a kick in the head.

Mom WAS in a facility before she "came home to die". It wasn't much easier. I was getting constant calls, both from the facility and her. And I still have the financial piece and maintenance of the house.

If she were placed, getting rid of the house would not be a simple matter. It has never been more than partially cleaned out in almost 58 years. The thought of that alone is another nightmare.
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Lily, please FIND a facility.
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Mom is coming up on 3 months of hospice care in her home. As I feared, family members are starting to drop out. The person I had for at least half a day on Sunday hasn't come in two weeks.

I was with mom all day yesterday and it was if she was making a recovery. She was alert all day and didn't even take a 5 minute nap despite her meds being increased. She ate probably 800-900 calories.

I know I "should" be happy that she's feeling better but I'm SO TIRED. All I can think about is how long can this go on? I know Midkid's MIL is over 9 months in hospice now.

In the meantime I asked my brother to fix a small plumbing problem. He said he would but didn't show up.
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sp196902 Nov 2023
I hate to be an I told you so but I did try and warn you about this and how "dying" doesn't always mean they are dying anytime soon. I think it's time to start considering moving mom back into a skilled nursing facility. It would be cheaper than round the clock care at her house.
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Just read one of your responses. No one, unless an emergency, would be calling me at work. You have Aides and they need to handle Mom. Put your phone on "do not disturb" when u get home listen to the messages and pick and choose.
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LilyLavalle Nov 2023
You’re right, ever since moms rehab errantly told hospice that I LIVE with mom, they can’t seem to change her file to reflect that I live in a different town and have a job. I’m not supposed to be using my cellphone at work anyway. Now that I know she’s not actively dying, I need to put my phone on silent and not check it until I get out.
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So I hired a “live in” caregiver for the weekdays, and family, including me and 2 others, handle the weekends. I usually spend one night a week at moms, and it’s not horrible.

But as I was warned both irl and on this forum, the situation is extremely stressful. I got a text while at work that mom’ got water leaking into her basement. I have a home of my own, yet I’m always there to let moms workmen in. Mom’s home is 58 years old and has not had much, if any, maintenance since my father died 20 years ago. Mom was always afraid to spend money. (Although she did blow $ on QVC etc.)

I still have calls every day from nurses, the social worker, other hospice personnel, her doctors office, pharmacy, etc. Her aid calls me when issues come up, which I appreciate, because she wants to keep me informed, especially when mom is there making her own, often misguided, decisions.

Plus I still pay moms bills, handle her insurance, and now keep detailed financial records because the day is going to come when we have to apply for Medicaid.

Mom is starting to show signs of dementia and is often anxious or agitated. (They doctor did officially raise her benzo dose, for those who responded to my other thread. So now she will ONLY have the higher dose tablets, which are still a pretty low dose).

The worst part it not knowing when or how this will end. Will she become so agitated (or incontinent) that we have to place her in a SNF? Will she take a sudden turn for the worse, and then decline rapidly as many end stage pulmonary patients do? Or will this just drag on, as is, forever.

I have a lot of nightmares and anxiety myself. My brother, who was coming for 1.5 hours a week when I was still there every day, dropped out again now that we have the live in. I would be happier if he just handled the plumbers, etc. But he won’t, even though he lived there rent and utility free for 10 years.

No question here, just venting. DH wants her in a NH yesterday. But when she was there it was still phone calls every day, issues, complaints, and I was still taking care of the house and the bills. So I don’t see that as the big relief he hopes it will be.
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I was just reading another thread where someone was saying we wouldn't give in to unreasonabke demands if these were our children. In fact, caregiving has often been compared to raising toddlers.
The difference is toddlers are mostly happy and healthy (despite the occasional tantrum). Dying elders seem rarely happy, are never healthy, and the situation only gets worse. They WANT us to restore them to health and happiness but it's impossible.
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(((hugs))). Your husband comes first.

Caregiver is getting paid.

Mom gets what she gets.

Back off and be kind to yourself!
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So this is week one of having a 24 hour caregiver. Yesterday I went over because mom had a virtual doctors appointment. I stayed for a little over an hour and left (because I had an appointment). It was great. I woke up feeling like a normal human being.

Today after work I had promised I would drop off moms absentee ballot, and while I was out I went to Costco and picked up cases of Ensure and some other big items she needed or were on sale. When I got to her house she had dozed off and her caregiver had just started eating lunch, even though it was 3:30 in the afternoon (mom is really needy and it’s hard to get a break).

So I’m putting away groceries and the caregiver is helping me when we realize mom is calling. It’s really loud in there with the 2 window air conditioners and the large oxygen compressor. The caregiver went in to see what she wanted and apparently misunderstood her. So mom gets really mad, then I go in there. She starts bitching about not getting help (mind you, I haven’t even been there 15 minutes, and caregiver has been at her beck and call all day) and yells “you might as well just leave” after I tried to explain that I had been making trips from the car to the house with supplies . I said fine and started to walk out, then I realized that I was leaving her kind caregiver to take the brunt of her wrath that would ensue after I left.

So only for the caregiver’s sake I went back and listened to her bitch about the caregiver not immediately doing what she needed, and then explained to her she was being unreasonable, and that I was there doing her a favor and didn’t deserve to be yelled at.

Then I go home, 3 hours after getting out of work, and my husband picks a fight with me within 2 minutes. He’s pissed that I’m still going to moms and he wants her in a NH, period. (Of course that’s not what the fight was actually about, that was the subtext.)

So it’s work, shopping for mom, bringing in/ putting away groceries, getting bitched at by mom, getting bitched at by husband. Day over. Please don’t pile on. I know I created this hell, and my plan is to back off to visiting once or twice a week.

For those of you who are still providing the daily caregiving, you have my sympathy.
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sp196902 Oct 2023
Your mom is a selfish witch. You and the hired paid caregivers shouldn't tolerate being treated that way.

If mom loses caregivers because of her nastiness I really hope you send her to a facility.

I just saw a visiting angels commercial and had to laugh at these happy go lucky old people being helped to bed or with cooking. If only it was like that with even 50% of these elders.
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I was just posting on someone else’s thread about how my mother’s bad decisions about her health led to this point (not going to the doctor when she had pneumonia, not following through with IV antibiotics, not, complying with home treatment, not accepting help.) Now I’m thinking that the rehab recommended her for hospice to force her to accept help, not because she was actively dying.

Now because she has 24/7 care she is doing better. The irony is that if they had sent her home to live alone (again) she would have repeated all the same patterns, allowed full blown pneumonia to set in again, and possibly died.

Now she’s in this limbo, with low level antibiotic resistant infections, bed bound, but eating and drinking and taking meds, receiving bed baths, etc. This could go in for months…years?

I dropped the bomb and told her she has to have a 24 hour caregiver. Of course she started crying and trying to guilt me. She’s going to die sad and lonely and it’s my fault. Even though she has 6 relatives who visit weekly (3 who stay and care for her). Plus friends, church people, a minister, and all the hospice nurses, aides etc. She’s SO fortunate compared to others I know. In reality I think the relatives who are providing care are going to start dropping out of we don’t get 24 hour care. But WITH care they will continue to visit because it won’t be so much of a burden.

Tonight is my night shift (hopefully 2nd to the last one because the 24 hour schedule is to start in 2 weeks). I never imagined I could be this drained in less than 2 months. Idk how some of you do this for months and years. You have my deepest respect.
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Fawnby Oct 2023
I know the feeling. Months become years, years become eons.

I suggest, since there are others to take up the slack, you drop out first. It seems like a not-nice thing to do, but you've done your best and you're miserable. Once all these helpers (who are actually enablers) drop out, you don't want to be the last one standing. There is no merit or joy in that.

Since you already told mom she'd have to get a 24/7 caregiver, how about hiring the person and informing mom shortly before your regular shift that Susie Q. Sweetness will be arriving instead of you? Then stay away.

Mom is being selfish and inconsiderate and yup, she's dying. Next time she guilts you with the dying blather, tell her that we're all alone at the moment of death even if we're in a whole room full of people. Truth.
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Quick update. I went on my trip and had a great time. I did get a call from the nurse but it was minimal. TWO of the women I was with are also caregivers and both of them got calls from home as well :( Another friend didn’t go because MIL was dying. After being on this forum for a couple months now I figured she was going to miss the trip for nothing, but MIL DID die that weekend.

It’s been 3 weeks since I posted this my situation would be doable with a couple hours a day of more help. It’s not. My daytime aid only works from 9am-3:30 pm doesn’t want any more hours. No one wants to work from 3:30-7:30, when my nighttime aid comes. Mom “loves” the daytime
aid and doesn’t want to let her go. She’s also the friend of a friend so it makes it hard for me too.

In the meantime I went to a licensed CPA who told me to keep doing what I’m doing, and keep paying cash to “friends” while raising her homeowner’s coverage. Her very well respected pulmonologist said the same thing. (He also FINALLY told her flat out that she’s dying. No one has really done that up until now).

I then went to a lawyer who told me the complete opposite and suggested we get a PCA agreement so that I can get paid for my time and get some small part of her assets before they’re gone.

All this is a long winded way of saying I did a lot of research, made a lot of calls, but still haven’t gotten more coverage. So it’s still my husband and I over 35 hours a week. Mom has her moments of gratitude and concern, but more often she is demanding and complaining.

I need to get rid of the part time day person to get a full time one. Moms going to be furious, and I work every day with the friend who recommended her. Yes, you can tell me I was an idiot to hire her. But at the time I was providing full time 24/7 care, and getting a 6.5 hour a day Aid (first aid ever) was a HUGE sigh of relief.
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sp196902 Sep 2023
I am so happy you went on your vacation and enjoyed yourself with only one small interruption during it.

October 2nd will be the 30 days you said would be all you would do from below:

"The point is I brought her home actively dying. If I am wrong, I am tapping out after 30 days. Not completely out, but out as her primary caregiver."

Will a full time aide make it so you will be out as her primary caregiver? I don't see a single aide wanting to do a 9 am - 7:30 pm shift. That's a lot of hours.

You are still doing 35 hours of work a week to take care of mom, plus you work 40 a full time job. How much longer can you continue this? I am exhausted just thinking about working at that capacity.

Obviously actively dying can mean it's going to take a really, really long time in some cases. I hate to see another 30 days having passed and mom is still with it and just as demanding as ever. MidKid's MIL is on 9 months and that was with the prognosis that she only had 2 weeks left to live.

That CPA was completely wrong about just giving cash to friends who help care for mom. Everything needs to be documented and done correctly as per the other lawyer. Plus if she outlives her money and needs medicaid you want all of that correct paperwork otherwise that will another can of worm and problems you don't want to deal with. And yes you should also be getting paid for your care giving time. I completely agree.
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You are already burned out.
You need to take care of yourself, this is real and dangerous for any caregiver.
And please no guilt!
You are not guilty of anything, you did not create, contribute to this disease.
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Since Mom is paying for aids she has money. So place her paying privately. Her house will be an exempt asset. When she spends down you will apply for Medicaid if the house has not sold yet. When the house sells, Medicaid stops till u spend it down.

Or allow Mom to continue with her aides but the easiest way is to go into a Medicaid facility paying privately (my Mom 2 months) then apply for Medicaid.

You take your trip. Mom is cared for. If she needs to hire on more hours, so be it.

And yes, no money should be gifted if Mom may need Medicaid within the next 5 yrs. Also, her car is considered an asset. Can be sold at Market rate and used for her care but cannot be turned over to anyone. If she is no longer driving, I would sell it.
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KaciNC Oct 2023
My mother kept telling me to send money to my brother whom always seemed to need money for this and that. I'm her DPOA in a state that registers the DPOA. She isn't wealtly and now has $60 thousand left out of $80,000. What ever is left will go to him, although I imagine she may end up in a NH. I finally told her that I'm writng zero checks to him from now on. She's 90 and pretty healthy, lives in her own small apartment. I'm her primary care-giver, my brother lives 600 miles away and never visits.
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Let me tell you something plainly. Kissing your mother's a$$ and allowing her to treat you like garbage is not going to change her prognosis.

So stop doing that. She isn't going to change herself or her behavior at this point in her life. You are going to have to change your behavior.

Don't tolerate anymore of her pushy, entitled, and rude behavior.
Bring in more homecare to take care of her. Tell hospice today that you thought it over and made a mistake agreeing to be her primary caregiver. Tell them any reason you like from you taking on too much to the actual truth that she's an abusive narcissist and you can't be an effective caregiver to her.

Then let them make other arrangements. You can visit her as often a you like. Every day if you want to. You can be an advocate for her too and manage her care. Don't be her caregiver though because that's a bad idea.
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Your mother is a real piece of work, Lily.

Your mother has money. Let her hire full time help.

It sounds like you are trying to win her love by doing nice things for her.

Real love doesn't work that way.
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The same day I posted the “amazing development” I decided to take the window air conditioner out of my house and place it in moms house. It’s been 99-100 degrees in our area and her 2 very small units don’t keep up at all. I live on a mountain in the woods where it’s much cooler (high 80s lol).

She seemed pleased at first then later accused me of planning things behind her back and communicating with her HHA and not her. This isn’t true as I texted her first, but she often doesn’t check her phone. She also has the HHAs and my niece take pictures of all the rooms in the house when I’m not around. She’s says she’s not checking up on how I’m taking care of things, she just doesn’t remember to ask me to do it when I’m there.

I went way out of my way, enlisted help and gave up time preparing for my trip to do this for her. I’m not proud, but I ended up yelling, then she starts crying and sobbing uncontrollably, then she’s screaming she can’t breathe, and I’m the mean, bad daughter again.

I also got in a big fight with my brother, who wants the money that mom wants to give him. But he doesn’t want to visit her. I guess he wants me to mail him a bank check. He also wants me to sign over moms car to him, and then change the lock on the garage door so she doesn’t find out. I would never do that! I’m also pissed that about 4 people have asked me for her car, and she’s not even actively dying anymore.

I’ve suffered clinical depression in the past, but have been much better recently. Yesterday I actually wished I was dead, I’m just so sick of it all!
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sp196902 Sep 2023
Mom cannot be giving money to brother or any of her assets like her car. Since she is not actively dying anymore she will need to keep that money, etc for her care should she ever need to go on medicaid.

Tell all the people asking for things to f--k off.

I hope you have a nice vacation and really enjoy yourself. Take no phone calls from mom or about mom, just go off grid and let whatever happens while you are gone happen.

When you get back I would start working on getting mom out of your house and back into a facility.
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I had an amazing development yesterday. I had expressed to mom that me coming straight from work (mid afternoon) until 8:00pm was untenable because my husband and son are away and there’s no one to care for my animals. Then I’m thinking, wait a minute, forget about the animals, what if “I“ simply wanted to have dinner with my family? It’s impossible. Also, I go on a yearly getaway, which is this weekend. It’s all paid for, and I really want to go. (We have cancelled our modest vacations for the last 2 years after not going anywhere due to Covid the 2 previous years).

Next thing I know Mom gets on the phone with her church friends and gets TWO caregivers lined up for yesterday, so I didn’t have to go at all, and I had time to shop & pack. It’s the first truly selfless things I remember her doing in the last 2 years (regarding me, anyway).

Mom is paying for the HHAs. I have a daughter in college and a mortgage and would be broke if paid for even a few months of this. I’m inquiring into facilities that are close by, but they’re astronomically expensive, and I hear the care is poor. I would have to spend almost as much time at the facility as I do at her house to see that she get proper care, while still maintaining her house.

The better solution is that I get a schedule together with more of these volunteers and family that won’t do big chunks of time but might come for 2-3 hours. If I could have a little time to myself after work, and could go home even 1-2 hours earlier a day it would make a huge difference.
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BurntCaregiver Sep 2023
@Lily

If your mother needs 24/7 care she belongs in a facility with a full staff. You don't have to spend any time at a care facility with her except if you want to visit on Sundays like families do.

Yes, it is expensive. Your mother may have to sell her hosue and use the money to pay for residential care in a facility before she can qualify for Medicaid. She wouldn't be the first to and certainly won't be the last.

You can't count on volunteers or family members to pick up the slack when the paid caregivers aren't there.
Her best bet at this point is probably an assisted living facility or a nursing home.
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Who is paying for the day and night aides? Sounds like it's time to talk to mom about moving her into a facility.

It's a hard conversation though because how do you start it? Do you say well mom I thought you would be dead by now and since you aren't it's time for you to go into a facility?

It seems like all the extra attention and waiting on her hand and foot is giving her a new lease on life (similar to MID's MIL who was also on deaths door).

If she is paying for all the aides and her money is running out it would be an easier conversation because you could use the financials and logistics of that to get her placed.

You don't have to be at her beck and call either. Don't feel guilty when she complains you are not there ALL the time and are taking some time for yourself. our overnight aide might not be around soon what with her having to work during the day also so you may want to start preparing for that.

As for her mail and bills I would tell the HHA that all bills go to you not mom and explain this to mom as well.
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An update: When mom came home I believed she was actively dying. She had lost 70+ pounds, had already been on morphine and benzodiazepines for more than a month, was sleeping all day and not eating. She would only get up to use the commode, which is pressed up next to the hospital bed. Every use is an ordeal, with her O2 dropping into the low 80s, her gasping for breath on 7-8L of O2, and taking 45 minutes to recover. (Recover being getting back to her baseline of 92-94%).

Since she has now received 1:1 24/7 care for 2 weeks, she is eating, talking, staying awake most of the day and taking visitors. (Bathroom situation still the same). This is actually just was hospice promised, a longer life with better quality. But now she is back to making demands, complaining, wanting control of everything, having the HHA give moms bills directly to her and she puts them in a bag on the wall side of her bed where I can’t reach them, and making things more difficult for me than they need to be. Her caregivers think she is sweet and witty and funny and they love her.

I was so proud of myself for standing up to mom and hiring day and night caregivers. But the reality is I go to work, go straight to her house and stay until 8pm when the night aid comes, rinse and repeat. I also have all day Saturday, Saturday night and Sunday morning. I have family for Sunday day and night, but in only 2 weeks they have already canceled once. So idk if they are reliable (they WERE genuinely sick).

I’m down from 168 hours to 60 hour a week myself, but it amounts to almost every waking hour outside of work. I don’t have any meals with my family, miss yoga every week, and can’t even go grocery shopping. I did ask my brother to come for my lousy one hour yoga class, but last week I was in the ER, and this week he didn’t show and then said he thought I was “all set” because I had hired aids 😡. The frosting on top? Mom told me she felt “cheated” by how little time I spent with her last weekend.

Speaking of the ER, while I was there, I inquired about the nursing home I had the application for, because they are connected to that hospital. The nurses said the patients they get from there seem uncared for, which burst that bubble.

If all that isn’t enough, we love out overnight aid, she works 60 hours a week for us and has a baby at home. Her b**ch of a boss at the agency essentially forced her to take a day job that she doesn’t want, BY THREATENING TO FIRE HER, if she doesn’t ‘step up’. This is both cruel and I would think, illegal. I dont want to lose this lovely person.

Thank you for listening to me vent. I already know what the answer to this is, and I’m working in it. I’m SO, SO tired, and I’m going for my annual weekend away this weekend come hell or high water.
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BurntCaregiver Sep 2023
@Lily

I was an in-home caregiver for 25 years for both homecare agencies and private assignments. I operate my own homecare agency now.

I can tell you that your mother's aide who the agency forced to "step-up" and take the day shift also, is probably not telling you the truth.

Homecare agencies in general don't hire caregivers to work full-time hourly. Anything after 40 hours (in some states 35) is considered overtime and that means overtime wages. They would also have to offer benefits (another rarity offered to homecare workers).

The agency boss can't fire her if she refuses to work 18-hour shifts seven days a week. She's exaggerating. Keep that in mind.

Also, if you don't want to lose this lovely person, hire her privately.
She can quit her agency and work for your mother privately and be paid privately too.
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