Mom isn't mom anymore... I'm looking for some advice.

My Mom was difficult to visit, because it broke my heart. Every time any one in the family visited she begged to come home.  I thank God she was only there 5 months.  I now have my husband with dementia and my Dad who is 92, so I could face this again.  What I would do differently if the patient is miserable and verbally abusive is I would make the visits frequent enough to check their care,  and get the laundry, those sorts of things, but then leave within 10 minutes.  It wouldn't be hurting them anymore than they already are.  I have to hold my job too, so my father understands that if he becomes unable to care for himself, he said to bring him to the NH.  But my stubborn husband, I have a feeling, is going to be quite another story.  He has an excuse for everything, nothing is ever his fault, and his reasoning is totally off.  I just pray that his heart, or his cancer takes him before this "long road through hell," dementia, takes its toll.   You're doing the best you can; most of us are really doing way more than should be expected of any human being. Keep visits brief, and be blessed.

Gerip, you are me 5 years ago. My mom “crashed” due to a urinary tract infection (UTI) and while she was in the hospital, she was so off the wall, they had her evaluated by their Geri psych department. It was determined she could no longer live alone. Looking back at it, there were signs of delusions and paranoia well before this. My mom couldn’t come live with me because I’m my bedridden husband’s 24/7 caregiver, so I immediately placed her in a Skilled Nursing Facility. She was transferred there right from the hospital. The first time I saw her, the following day, she sarcastically “introduced” herself to me. When I told her I was her daughter, she smirked at me and said she knew who I was but it had been “so long” since she’d seen me. (One day). Things deteriorated from there. I brought her snacks and McDonald’s which she loved, little personal care extras, etc. She also claimed they didn’t feed her, often when there was a tray full of food right by her bed. She resented the staff touching her clothes and she’d throw them out the door. When they offered to bring her to activities, she refused and then complained she was bored. She often asked me why I did this “to” her when I’d done it FOR her,to keep her safe.

What I’m saying is, don’t beat yourself up over this. Your mother is where she needs to be, no matter how she tries to guilt you into “springing” her. You’re not aiding her in her escape, so she “hates” you. It’s like a child who doesn’t get the toy they want, or the teenager who isn’t allowed to go to a party. They scream, “I hate you!” at their parents. Under no circumstances should you bring your mother to live with you. You can’t do it, but she doesn’t understand that. My mother thought she could live with us, too, in the upstairs of our home. I shudder to think how many times I would have had to call 911 when she took a flyer down the stairs. Do you want Mom and her vitriol to greet you each morning and last until you go to bed at night? You CANT quit your job. You need health insurance and a retirement account, neither of which you’ll have if you quit, or to mention any income.

You’ve done the right thing. Know that even though it’s difficult to accept.

I might try to get some support from others who encourage you to let the professionals take care of your LO. There sounds like a lot going on there and she needs extraordinary care. Not really feasible in a household with one person.

Keep in mind that people with dementia have magical thinking, like they can manage in a home though they can't walk, have no short term memory, are incontinent, etc. They may think it's a easy solution, when in fact, it's a fantasy.

Plus, if you were going to place your mom in a facility and they said that ALL the care would be provided by one person, around the clock, 365 days a year, how would you feel about it? I think it's important to be honest with ourselves about how feasible and realistic things are.

Yes, I feel you, My mom doesn't hate me yet, but she blames me in all her troubles, and yes, it hurts, hurts and hurts....And I am trying to visit for short time too. Guilt for not taking her home? Yes, but it will ruin the life of the whole family, so all I can do, crying ad crying. If I only have enough money, I will bring her home and hire professional 24/7 caregiver, but I cant. Advice? Visit rarely! Thats the advice everybody giving to me! Can I follow it? not yet....:(

I've recently been rereading Being Mortal by Atul Gawande, you might find it an insightful book to read.

Dear gerip1092,
As you said in your post...
The doctor recommended 24 hour care. Find the bigger bad guy here (in therapeutic fibs) and blame them!
Say... Sorry mom, I know you hate it here. But we are following the doctor's orders! I would love to take you back home, but the Doctor says that you need 24 hr care. Be prepared to say that at every visit.

And, Short visits. If she is decent, stay as long as you need/want. If not, if she keeps harping on how miserable she is, say, welp, sorry mom, I have an appointment! See you later.
And just a thought on timing... I try to only interact(for longer visits anyhow) with my mom in the morning. She is still somewhat my mom then. Sometime after 2pm...that changes. And any trouble we have ever had, has been after 2pm!
So maybe only visiting in the morning would help?

A reasonable person(and wow, don't we KNOW there isn't a thing reasonable about dementia!!) wouldn't continually expect more out of you than you can actually do. And you don't expect that of yourself either, right? So, please don't feel guilty. Wouldn't she probably be miserable anywhere? And how is that your fault? It isn't. Aging and disease are cruel.

You are doing a great job! She is being well cared for. Clean and well fed and safe. And has activities to be a part of, even if she doesn't remember. That is the important thing to focus on.


Hope this helps.
Hang in there, and big Hugs.
Sparkles

This too will pass. Its not they are like children, they r children. As such they should be treated that way. Tell her you r not putting up with her being nasty and walk away.

I feel for you. I am the youngest and the only one of my mom's 3 children and 5 stepchildren that visits her regularly. I take her out for dinner and shopping, take care of her banking and bills, and am the one that her memory care facility contacts for virtually everything. I bring her home for a few days at Christmas, do all her gift shopping and wrapping for holidays, make sure she has reading material and snacks, etc. Yet, as I pointed out to her the last time I saw her, I am also the one she rants and raves at. All of her complaints about the facility and life in general are directed at me. The fact that my siblings won't go to see her - also my fault - couldn't possibly have anything to do with her attitude. She piles on the guilt because I couldn't continue taking care of her when her dementia and health worsened. She loves my kids but resents them because they come first with me. Every time I leave from my weekly visit, she makes me feel bad and I wonder why I put myself through it. Now, as much as she complains about the facility - and boy does she complain! - she is fond of several of the workers and the other residents. She enjoys the crafts and activities they have and participates in every outing. A few times when I've taken her out, I've been told she "has to get back" for a therapy pet visit, a bingo game, or to have one of the aides do her nails. I could never give her all that attention at home, so despite the guilt she makes me feel for placing her in memory care, I do have the satisfaction of knowing she is being properly cared for.

gerip, this is where my head is at this morning! My mom still lives on her own, and the other day she got combative on the phone with me and again when I went by that day. My friend who goes to see her a few hours most weeks had to listen to her rant about me yesterday. I’ve always sort of had this problem, though. I get the treat of calling her today to remind her I’m taking her to a dr. appointment tomorrow. It will involve listening to how terrible I am for the first 10-15 minutes. She’ll remind me that it’s my duty to keep our interactions easy for her, which was her line the whole time I was growing up with her as a single mother. She doesn’t get that it’s me with the burden now, and she should actually be working to keep things peaceful. :) I’m so good at emotionally detaching after all these years, to shield myself from someone who’s supposed to care for me but actually uses me for her emotional exercises, that I don’t seem to be making attachments to other people so well anymore. Short and sweet visits is definitely the way. Please use my story to reinforce that she’d be complaining no matter where she was. It is very sad.

My mother seems to be easiest in the evening/ night... I think because she doesn’t have the whole day in front of her that she knows won’t contain anything but TV. At night she’s calmer after hours of bonding with all the grousing on her conservative talk shows. She hates not being productive in life anymore, and I have tried to help within my limits but just couldn’t help with that. Good citation by willie about that book, if thenelder doesn’t have any purpose anymore life is empty. We must all plan for that best we can for ourselves!

Good luck. We have to know we are not as these poor folks define us.

Great responses here. Are we siblings? Sounds like we all have the same mom. 🤗

Part of the tragedy of this whole generation is that some of them are so “house proud”.
My mother was born in the house that was built by HER GRANDFATHER in the late 1890s. She and my dad bought a house behind that one, and she only had to go a few yards down the walk to get to “the family home”.
SHE expected to die at home, and so did the other brothers and sisters who continued to live there.
When Parkinson’s, Cancer, and vascular dementia took them away, a sibling always remained.
My mother spent 6 very comfortable years in an excellent NH very near me after breaking her hip at 89. The heartbreak of taking her out of her home made me physically and emotionally ill, and only now, 10 + years later, have I reconciled (somewhat) my “failure” to “keep her home”, where she would say, early in the battle, she wanted to be.
Now, I’m caring for her youngest sibling, the last, who entered AL at the least restricted level of care, but almost immediately was moved to the locked memory wing because of her inability to stop trying to “go home”.
I tell myself many times a day that her misery is not my fault, but I HAD TO BE the decision maker.
It doesn’t help AT ALL that she’s already broken a bone in a fall in her room at the AL, but what DOES HELP, is that the care she received for the injury was immediate and has been totally consistent, and I KNOW that no matter what kind of supports we’d have had in her home if she’d had a similar fall there, could never have been as good as what she’s receiving now.
There’s no solution that completely fixes this longing in our dear ones, but it helps me at least a little to know that their battle to make lives and get through the Great Depression can still, after all this time, be part of their lives now.
We do short visits, photos and treats, light conversation, pre-planned reasons for why we have to leave.

Nursing home life is quite depressing for someone that is not a social butterfly. Its easy to feel alienated and alone. Did she speak with many people when she was not there. Her own landline would be nice less than $15 a month. Cell phones are not very functional for the elderly. Also, does she have a TV in her room to entertain her? When you visit, can you have staff put her in her wheelchair and take her outside for fresh air? Is it possible to have patient transfer service to pick her up and take her to your home for a weekend? My mother was in a NH and I got no peace so I began to bring her home on weekends. Once I saw she was willing to do the work to be at home, stand and pivot to get on portable commode next to her bed, I brought her home. That was 16 years ago and we are still going strong and she is 81 years young. There are ways to entertain Mother that makes life easy on everyone. Good luck.

Dear G...
It sounds to me like you answered your own question and more than anything need a hug. You have done a remarkable job while your brothers did what? You advocate, keep track, and even do what I would find the breaking point, of cleaning her up physically. My mom's dementia is interesting in that while the memory is blown she is still physically quite functional. If my frustration and anger get the best of me, which I am trying hard to not let that happen, for my OWN well-being, she will revert to one of her Chatty Cathy snippets like "if you don't like it you can move". She is 96 next month; dad is 101 active with his issues, but deaf. The deafness has been an immense challenge for me (yes, not to mention for him) but at times is a blessing because he cannot hear what I am saying or screaming.
Mom and I have always had an antagonistic relationship. Has she done her best? I am doubtful. I try to realize she was limited in her own upbringing and capacities, but she was never an advocate for her own kids. Seriously I learned in the past week that my sister told me she was being pushed and bullied and that was why her tights were always ripping when in elementary or junior high...but my mother knew and didn't do much but bring new pairs of tights. So here we are now, the same old same old.
It's hard to sort out her vicious spitefulness from the dementia. Here is a woman capable of leaving one or sometimes two neatly written notes for me that say "taking dad out to lunch" or "went to a concert with dad to humor him" and yet in spite of a note that says DO NOT UNPLUG which has been placed by an outlet three times in the past 24 hours, she persists in unplugging it (the microwave) which requires a total reset. (looking into something to cover the outlet to protect it.
I empathize greatly with you because I am "IT". For now my dad is often around to keep an eye on her. If and when we lose him, I will need to continue to work to maintain my own life and retirement. But mom won't be able to be left alone as long as my part-time work day. I take it one day at a time, but worry.
Just because you are the girl/daughter, doesn't mean it's all your responsibility. Subjecting yourself to the emotional abuse in spite of being able to rationalize it is still painful. Cut back on how often you go. Take care of YOU. You have done the right thing, before you impact your own health, both physical and emotional.
I am not a support group person, and not all groups are the same...but our local Alzheimer's Assn did develop a group for adult children that meets once a month and I have found it very helpful. You are so not alone, and those of us who don't have the best relationships with their moms can so relate. This won't last forever. Take good care. Of you:-)

Some other answers are mentioning timing of visits. I found that my dad was in a good mood just after he got in bed at nite. We had good visits then. Try different times. Try to have something to do with her when you visit. And yes, blame the doctor for why she has to be there. I liked to pop in at all hours of the day and night just to see what was going on in the facility. That way I was able to assure myself that nothing bad was going on, no matter what he said. You need to take care of yourself, so if the visit is not going well, just leave. I know exactly what you mean about being the only one who visits. By the way, most of the people visiting seem to be female. Men, please take care of your responsibility! Just be thankful that the other family members are not obstructing or criticizing what you are doing.

You have memories ... she doesnt. Not that thats particularly consoling 😢

Sister, I’m so sorry you are dealing with this and your siblings are in caring people .. your story is so so close to mine except fact my
mom isn’t in a care facility yet!! She’s so mentally ill and hates the world and her daughters... After a final blow last week of her degrading me and calling me nasty names afte all I’ve done for her I’ve chosen to walk away from her and let God handle the situation .... My mental safety and peace must be priority !!! I’ve learned with my faith that I need to set boundaries with everyone in my life .... My advice to you is if your mom is set in a good place and there are people who are paid and trained to deal with her .. you set some boundaries and go visit when you feel at peace enough to do so.. I will send prayers up for you because this is a serious struggle for many of us.. But there is always hope !!!! Always !!!

You clearly already understand this is mostly the dementia talking (could be worse if she was already a negative Nancy prior to dementia!) You are doing the job the rest of the family are not and should have no guilt laid on you by her (learn to let that roll off, you know what you do for her!!!)

The best you can do is learn to tune it out. Change the subject to something else while there, if possible. Fudge the truth and/or responses. Don't argue or try to correct anything she says, just go along with it - they live in a new "reality". You can even go so far as to agree with her about how uncaring and nasty you are... :-) It would kind of take the wind out of her sails. YOU know the truth. Someone suggested having staff get her into her chair and take her for a walk (I would avoid the suggestions about taking her home!) That might give her a change of pace/scenery...

Someone mentioned how this behavior can get worse later in the day (sun-downing) Sounds like in your case this is true - several options are to visit earlier in the day if possible and/or some mild anti-anxiety med (I am not a fan of meds, but sometimes they are a necessary evil. Mom will occasionally get into a snit and I had to fight doc for it, but we got a mild Rx and use it only when needed.) One doc argument was it can be a fall risk, but it is only as needed (not often), she uses a walker, and generally it is late enough that within 30-60 m she goes to bed. Your mother is in a wheelchair, so there would be no fall risk.

So, understand you are doing the best you can, learn to tune out her rants, shorten visits if need be, make earlier visits and let the guilt roll off your back. You can see from the responses this is common behavior, and although it hurts and can be difficult to let it go, that is about all you can do. Also, if she blames you, repeat it is doctor's order (he/she gets the blame!) and she has to work on getting stronger, better, taking care of herself to get "home" (white lie, but may help redirect blame AND give her hope, false, but hope about returning home.)

If other family members give you crap, tell them if they are so smart they can take over and let them rant all they want! If they do not put up, they can shut up!

Funny that before moving mom, I usually got the blame for stuff, some really nasty. Since moving, she harped on my younger brother to take her back to the condo, even if I was standing right there! She has since forgotten the condo, and is focused now on their previous home (23-24 years ago) AND her mother (mom just turned 95, her mother has been gone about 40 years!) So I am fortunate that she no longer blames me. She might sometimes ask me to bring her to her mother's, but I say oh, too late in the day and it is not on my way home, maybe tomorrow! That is usually good enough. Generally visits are benign for me, thankfully, especially since the step back in time!

Getup, it sounds like you are a very caring and nurturing person which is probably why you hurt even more. I too am mourning the loss of my original mom as well as each subsequent Mom personality that comes and then also goes away. Some of the “new moms” are nasty, some are very emotional, one was suicidal, one was compassionate, one acted like a child, and the list goes on. It’s a horrific disease that causes all of it and it’s heart wrenching. The strategies tat seem to work best for me are to visit only when I feel up to it, play every visit by ear, and be willing to change whatever plan you had to interact with your mom on a dime and be ok with it. I’ve also found that planning my visits near meal time is helpful as well because even if your visit starts to go south, you always can depart and say, “ Gee Mom, it’s almost your ——- time, so I’m going to get going so I can get home for my breakfast, lunch, dinner too. See you next time, I love you.” Most of all,try and remember that we really do mourn repeatedly for the person we knew as the disease progresses. I wish you the best.....

Your story is mine! Same song second verse. What’s somewhat "comforting " is to hear that we aren’t alone after reading the responses. Dementia is horrible for what it puts us all through. When I heard Aretha Franklin died at 76 from cancer etc, I thought I’m glad she didn’t have to die of dementia. That is how I feel now...I’d rather die of cancer, heart attack or anything than have dementia. We are living too long and this is where it lands us. So my advice is to do what others say. I’ve also determined afternoon is worse for my dad. And if he begins to take the negative, blaming record off the shelf to play for me..I say dad, I have to go, I have an appointment or I don’t feel good (which is true, because of him!) and bug out of there. Then I try to treat myself with little things. I’ve also begun a daily 10minute meditation practice and it has made me calmer.
Do not get her a phone as one person suggested...she will only call you to yell and complain and you don’t need that. The thing is, YOU can’t change her or make her happy. You can only be responsible for her needs and accept that you can’t be responsible for how she feels. I’ve realized my ideas of what might make dad’s day better are fantasy. He can’t, won’t, and will not be happy until he’s left this earth. Sad but very true. I just do the best I can and that’s what matters.

Gerip1092:

Gerip 1092 said: " I have 2 brothers, but I am the only girl & the only one that visits her. She hates me... She never has anything nice to say to me or about me. I know it is the disease talking, but that does not make it any easier. "

Gerip your words suggest that perhaps your mother has always been abusive toward her children on some level, all her life.

If not, your siblings would understand it is the stroke and still visit and just not pay attention to her hateful post-stroke talk.

When a parent has been abusive all their life, it becomes difficult to tolerate any further abuse. If others have not witnessed the abuse, they can never understand the child's logic for not visiting.

Parents can sometimes be more abusive to one or more children while favoring another, while hiding the abuse to the less favored children from everyone.

Perhaps that is what happened with your brothers.

If parents are loving and giving, their children will likely not abandon them.

Was your mother always somewhat abusive toward you in her speech or is this only since the stroke 16 years ago?

My guess is the reason you can not NOW ignore her abusive words, is because she was always talking to you this way, even when she was younger an healthier.

If that is the case I agree that you have her in a good place, so now perhaps it is time to walk away. "let go and let God" as they say.

As, I have prior posted, Most religious texts state that abusive parents do not deserve to be respected nor honored, and their children are not mandated by their religious background to respect or honor them.

If you need to walk away to save your sanity, as your brothers have done, do not let anyone shame you about it.

The people who may be encouraging you to endure an abusive parent, most likely had parents who were loving, until the dementia took over.

So they will not be able to relate to, or understand, your lack of tolerance, nor your dilemma.

Your mom sees you as a barrier to what she wants but can never have given her circumstances - her dementia has focused on you but that will too pass as she makes the long slide down the slope of dementia

If asked what she would want I'll bet she couldn't tell because it's just 'other' than what she has now - for now just roll with the punches of ingratitude that seems to be the lot of the person they are closest to but won't admit is doing the right thing for them

Dear Gerip, I certainly hear you and sympathize with you. I agree with the advice to take care of yourself first. And you can drop by the NH, talk to personnel, check her room and gather her laundry when she is in the dining room. Some days just walk on out, other days a five minute “whirlwind visit” can suffice. I do understand and you cannot go down the tubes with a dementia patient no matter who they are.

My heart goes out to you. My mom is 90 and is in fairly good health except that she stays in a state of dehydration because she won’t drink water. I sacrificed my whole life to make sure she has been taken care of in spite of my brother who has taken her for $250k since my dad died. I recently overheard several conversations between my mom and brother talking about what a horrible, controlling, bossy person I am. Hurt terribly. Still meeting her needs, but our relationship will never be the same. I recently moved my 103 year old aunt in with my husband and I. It is literally a 24/7 struggle trying to get her to eat and drink...but she does appreciate it. Just do the best u can and try not to feel guilty about anything. U r a great daughter...many wouldn’t hang in there like u have!

This was Deja Vu for me. I took care of my mother for 11 years following her stroke. We had many setbacks and hospital visits during those years, and most of the time she was cooperative, but as we got nearer to the end she became very negative and anything I tried to do was a challenge. She eventually was diagnosed with colon cancer ( I might add that her doctor offered her a colonoscopy many times throughout the years, but she always refused). The last 4 months of her life were pure hell....I believe for both of us. She had surgery to remove the tumor in her colon and was never the same. I stayed round the clock at the hospital, only leaving to run home and shower and feed my pets. When the hospital was ready to discharge her, she was still very weak from surgery and her doctor sent her to a long term care hospital where she was able to stay for the better part of a month. The first night she was there, the staff told me to go home...they didn't have space for me to stay like I did in her hospital room...it was a semi-private room with only a straight chair by the bed. When I arrived to check on her the following morning....she greeted me with "You don't want to take care of me anymore than the man in the moon!"...then she looked me straight in the eye and told me that she knew what she had said. i continued to visit every day....trying to encourage her with physical therapy. I told her if she could regain enough strength for me to be able to get her on the bedside commode, that we would be able to go home. She refused to take part in the physical therapy....telling the therapists that she was scared. We had excellent people who were patient and continued to try to support her and encourage her in spite of her refusal to try. She developed some skin tears and wounds that wouldn't heal and the doctor prescribed extra protein drinks and I did my best to get her to drink them...but it was a fight all the way. She would only take an occasional sip and it would take up to 3 hours to get 8 ounces down. I visited daily..and spent quite a bit of time trying to encourage her to do her best, but she did not want to cooperate. She also didn't talk to her roommate at all...even through they were really nice folks. When the doctor discharged her from the long term care facility, she was sent to a nursing home for the 100 days of therapy that Medicare pays for. The first place she went, I selected because she could have a private room there and she didn't like being in a semi-private room in the hospital. She hated that place and even though I was there daily, she was miserable. After a week there, she was complaining of having trouble breathing and they sent her back to the hospital. She was only there a few days when they were ready to discharge her and she was adamant about not returning to the same nursing home. I didn't have many to choose from, and chose one where she would be close to my daughter's house so that my daughter could bring the great grandchildren in to visit, as they seemed to elevate her mood. Well, she hated that place, too. She refused to go to the cafeteria or to the recreation room/library, or to sit in the common areas. I visited everyday and she was always angry with me...telling me how neglected she was. This really played on my emotions, as I always felt very responsible for her care and her happiness...but, I couldn't bring her to a place of acceptance or peace. One day she told me she was ready to die, because she was being so neglected. I continued to visit daily, and she continued to become more miserable and struck out at me verbally on a regular basis. Being her only child, I really internalized all the negativity and felt tremendous guilt all the time. If I stopped at the market on my way home, and lingered in the garden department trying to find calmness, I even felt guilty. She passed away one evening, after I sneaked out as she dozed. I still feel guilty.

I understand you completely. You have these feelings no matter what the reason.
The best thing you can do is take frequent breaks for yourself. Know you are not alone.
Come here and cry whenever you feel like it. This is a time none of us could ever imagine.

Or wish on anyone else.

I understand you completely and what you're going through. Get respite when you can. Join a support group. They're out there. Remember, this, too, shall cease.