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!
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.
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.
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.
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.
Caregiver is getting paid.
Mom gets what she gets.
Back off and be kind to yourself!
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.
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.
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.
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.
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.
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.
Perhaps hire a company to clean out the hoard. Good luck .
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.
You are the only person who can take care of you and your husband. Mom has other options for care.
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.
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.
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.
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 .
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.
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.
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!
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.
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.