How do you judge whether or not you are doing the best you can, when the Mom you love is so unhappy with her life?

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I am on only child, caring long distance for my Mom. Her health went from bad to worse in 2010 after she called me experiencing what turned out to be a brain hemorrhage. I traveled to be with her and care for her for 3 months. She ended up back in the hospital two weeks after I left. Evenutally this led to her being placed into a nursing home. Initially we were set up for assisted living and she backed out at the last minute. There are no friends or relatives to help. She cannot travel across the country. I am unwilling to give up my home and move to be closer to her. I do not travel well myself. I call her every day or so and each day the conversation is the same.She says she wants to get out of there, she hates the people there, the food is awful, she will not let anyone touch her and she wants a place by herself. She has always been somewhat reclusive and because she feels so poorly, I know she is very emabrrassed about how she looks and feels.

I have hired an elder care nurse who is wonderful and sees Mom every two weeks. Her regular doctor felt a nursing home was the best option for her, because she wouldn't let anyone in her home to assist her with anything. She didn't even want me there and had a psychotic break over me being with her. She does appreciate some of the things I have done, but this is not how she pictured her life in her old age. She feels she has been stripped of her life and I have to admit that is probably true.

She is 91, suffers with dementia, behavioral dilusions, develops blood clots (has a vena cava filter to prevent problems), has really bad osteoarthritis and has short term memory issue as well as aphasia. Now she has not let anyone touch her for over a year, and her toenails are so bad, they are grotesque. She has anxiety and depression and paranoia (getting meds for this). They finally got her into the beauty shop to cut her hair and she was very upset that they "violated" her in that way.

She will interact with her roommate and others and she seems to save her worst moods for me. Guess she feels comfortable with me.

Today, was like most. She just wants to die because she is so miserable and she hung up on me. I have talked to the social worker, her elder care nurse, and friends. I wish I could make all her wishes come true, but I cannot in good conscience give her what she wants, which is her freedom and the control she used to have. I am at a loss and feeling overwhelmed and sad. Now I have total control over her finances and all the other things I should have.

Back to my original question.....am I doing enough and if I am not, who will tell me?

Thanks for listening.

Answers 1 to 10 of 10
Top Answer
Joyce W ---I am in the same boat as you and many others. Love can't fix this probelm. I HAVE asked myself many times if I was in my mother's shoes would I want "this" and my answer is "HELLNO". WE know when a parent is MISERABLE FOR TWENTY FOURS HOURS OF EVERY DAY...The aides, nurses, and doctors do NOT know this, nor do they care. They have a job to do and they will do it - for anyone, anytime, anywhere, and for any length of time. You are doing the very best you can do for her, too bad we all are truly unable to provide them with a dignified and peaceful death at the point when they truly have no quality of life- not for one minute of one day. . That is what I pray for my mother, I don't know about anyone else. I do know that it is not an option in the U.S. and it SHOULD BE! Modern medicine can keep bodies alive for years and years. This is why I tell family and friends that I honestly PRAY my mother gets cancer! How horribly sad is that? As for not wanting anyone to touch her---that is VERY common where my mother lives (dementia care assisted living). Think about it----it's the "last " ounce of control she can have over her existence....do you blame her? A study was done asking thousands of elderly people what they were most afraid of, and the obvious answer should be "I am afraid of dying". The over-whelmingly REAL answer was : "I am afraid I will need help wiping my butt in the bathroom." and "I am afraid I will go to the bathroom in my pants." That speakes to the DIGNITY that the medical profession seems to disregard. God bless you Joyce W. it's heartbreaking and a helpless place to be right now. I know.
My mother and I were joking in a way we had her whole life.
" Place me on a Barcalounger on an ice berg in Alaska, give me a ton of Valium and just push me out to sea."
"Let me jump off the cruise ship with my boogie board and a belly full of valium."
"Watch me paddle out until I can paddle no more and then i will down a gallon of vodka and say good bye."
We planned our peaceful ending where we would no longer be a burden.
She turned to me clear eyed. "Your grandmother and your father have taught me that by the time you would really want to paddle out, you are not strong enough to do it yourself and none of us have the courage to help you... nope, sweetie we are going to have to ride this one out to the bitter end"
I remember that day clearly these days as my mom wanders purposeless through our house.
I truly do understand what must be an overwhelming sense of helplessness concerning my mother. I moved my mom into an assisted living facility almost 2 years ago because my husband and I determined it wasn't feasible for her to live with us anymore because of medical needs and we have 2 young children to care for. It's taken me all that time to finally come to the conclusion that Mom was also a recluse who didn't like anyone and wanted to control her own environment, schedule, etc. I try and make short visits every morning to check on her and her basic needs are being met, she's clean and most importantly, she's alive. I almost suffered a nervous breakdown trying to make her happy and had to work thru my own guilt, resentment, etc., to realize that it's important for me to live as well. I pray you find peace, and find it soon for your sake.
I can totally relate to what you are feeling. I ask myself the same question daily. Am I doing enough? My Mum will be 91 in June and until 3 months ago was still living in her own home. I'd visit everyday morning and after work, Call many times during the evening. Mum started becoming very frightened being alone and started working herself into a panic attack which led to breathing problems and a couple of hospital stays. We are lucky that her only health issues are high BP and mild cong. heart failure. Since she is so miserable at home alone, I gave in and moved her in with us. Which I thought would be the answer. What more could she want....what more could I do! Now mums not happy because she's in the house too much and "can't do what she used to." I can't seem to make her happy. We wait on her hand and foot, and she is treated like a queen. I'm now finding myself getting short on patience. I just want her to accept being old, and just enjoy every day that we have together. But all I hear is negativity and sadness. It's really getting to me. I don't know what to do to make her happy. I try to put myself in her situation and think about what it's like to be 91 and limited in ability etc. Why can't our parents just be happy to be as well off as they are?
My words are not a solution, but I hope the realization that you're not alone and we can all relate to your situation helps a bit. Susan =^..^=
Pink, I'm not sure I have the right words for this, but I'll try. And I'll speak from my own experience...it may resonate, and it may not.
My dad has been described by the outside caregivers as charming and kind. He is 180 degrees away from that with me. His way of launching conversation is to complain about something. That's a new insight for me; I just heard the complaint, and not the desire, underneath it, to be engaging with someone. To be sure, he IS complaining. He IS demanding that I somehow change his circumstances...and not just today's circumstances. A part of him believes he'd be happier now if his life has been different, and it is someone (else's) fault that it wasn't. It's unpleasant on a good day, and infuriating on other days. And in MYSELF therre is an undercurrent of sadness that I can't help this Being become happier.
When I can step back, detach from his feelings and mine, I have an easier time connecting to the finest part of his being. Whether you call it soul or spirit or the god inside all of us, or the part of you that has no thought and sees through your eyes...whatever you call it, THAT is what I mean. When I connect with him there, I am understanding of what is true in him despite all the schtuff that is being said in the moment.
Somwhen you wrote that she needs understanding, that's what prompted me to write. Maybe try this. Connecting with the swirling emotion and her fear and panic and anger is exhausting, and it doesn't help either of you. Stepping into her room, or onto the phone, after you have centered yourself enough to connect with the finest part of her being...there you will feel an understanding and connection that may soothe her (it may not, too! But it sometimes does) AND you'll be detached in a loving way. Now that may last a few second or minutes or hours.. I lost sight of it for almost a whole week, last week.today. For some reason, it's easier, I expect it will be like that dor you, too.
The ache below what she is saying is where to send the love and understanding. It took me all the previous sentences to get to that one. Love the best part of her, and see if the rest of her doesn't feel it too.
I do truly understand as I work for a NH and many of our dementia residents make
the families feel so bad at times because they really don't remember what they told you on the phone 3 hrs later. They down side is that we cannot make our residents take medications or even bath if they don't want to. We do try to brie them at times, if that is what works, They do love sweets etc. But that doesn't always work either. Try to remember that even if you were close by, it would probably still be the same for her, she still would not be happy and that would make you even more unhappy. I've seen it happen many times. My own mother kept telling me she was going out of state to live with other family. I told her that if she could get there, GO FOR IT. She would let it die for a while and then would start again. Good luck to you but please don't be so hard on yourself as it appears you are doing all that you can. Just end your calls to her with Mom, I love you! you will feel better in the end. God Bless!
I'm ready to scream.......I just asked Mum why she can't be as sweet with me as she is with people outside the family. The visiting nurses think she is the sweetest person. Her reply to me was because you're different with me when we are home. Is that a true narcissist? It's never her fault, she's never responsible for her actions. So again, I have this pit in my stomach, She thinks it's her right to criticize my husband because "you're my daughter." Sorry all......I just needed to vent!
Your situation sounds so similar to mine. First off, the patient has a right to say, "No." Everything you are doing for your mother is because of love. You must believe you are doing the best you can given the distance and her issues. There is no way you can make her happy. So, please, trust that you are doing fine. She is lucky to have you and no one can take that away from you.
Take it from someone in the same boat.
(Can she be given a sleeping pill to cut her nails?)
Joyce, the only thing I can tell you is from experience, she wil have to be given something to knock her out. when she wakes and is upset at "being violated" tell her that this policy "being sedated" will continue unless she is able to cooperate. You know her better than anyone and you will be able to make her understand that. Sometimes you have to be tough and it hurts very badly. My mother is alot like yours. No amount of reasoning or trying to be delicate ever worked. She had to be told by myself and a nurse that she must bathe and allow cna's to help her or she would be sedated every time , she was also made aware that if she did not bathe and take care of herself she might get an infection that could possibly land her in the hospital. I love my mother so much and it broke my heart to get tough but sometimes it means the life and happiness of your loved one. I would exercise my right to find another Dr. for my mother if he is not giving her one on one care. Any dr. that is worth their salt as soon as they lay eyes on your mother would know there is a problem, he should be your advocate when you are not able to be there. She possibly could be standing her ground as far as being in a elder care home maybe she belives that as long as shes there she refuses to cooperate she will be allowed to go home , maybe if you made that clear to her (thats not going to happen) you might get some cooperation. I hope that this helps I know it hurts to have to put your foot down. But thats what I had to do and it worked. My heart and prayers are with you. Its not an easy job.
The only question I have for you is sort of a oxymoron, if you were taking care of you and were in your right mind, would you be pleased with how you are doing things? I know it's a crazy question in some ways, but nothing you do or don't do will change her health issues.... and apparently you or the Dr's can't MAKE her let others help with her care.... have you asked her Dr. about alternatives ? I think if it were me, I would call in a phyc eval or have the Dr. order one.... I am having a really hard time accepting that no one has cut her nails in a year.... not calling you a liar, just wondering exactly what her Dr. is doing for her welfare...Surely someone on this sight has some answers for this one.... but sounds like you are doing all you can for her under the circumstances..... Can you hire an independant caregiver to set with her a few hours everyday, and after a possible 'bonding', she will allow this caregiver to do more hands on care??? I'm sorry, my mind is jumping all over the place with this one, but I do know you might need to get the Dr. more involved... let us know how this turns out....

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