Friday before last, I called the ambulance and said "take her away". Actually, I said "my mother need to go to the hospital because something is not right". But Mom heard "Take her away" in her dementia addled mind. In the ER, I asked her if she knew why she was there, she angrily spat out "Because YOU put me here."
So, now she has progressed to a rehab facility very near my house. My message the whole time has been "get better so you can come home.". I have been trying. I really have. I bring her things to make her comfortable. I have kept her caregiver on payroll and have her sitting with Mom for four hours a day to keep her comfortable and run errands for her. I offer to bring her anything she wants, food, books, anything.
I am tired of being met with stony silence. I am tired of begging her to interact with me. I am tired of the angry glares when I ask her how therapy is going or if she has been eating. She doesn't eat, by the way, and I spend most of my visits trying to get her to eat and begging her to keep her strength up. You know what, though, it turns out I don't really care anymore. I had my moment this morning. I have decided, here or at rehab, I absolutely don't care anymore. I don't care if she eats. I am trying to decide whether or not I care if she takes her pills (a two hour ordeal twice a day).
I visit her daily but can't stay long with a woman who can't/won't carry on a conversation with me and so obviously hates me. Funny thing, everyone else says that she talks and miles and such so it is not that she is incapable.
She has mild to moderate dementia but she is not so far gone that she can't make decisions about whether or not to participate in therapy or eat her food. She is "with it" enough to manipulate me and everyone around her.
I told rehab that I don't want her back if she cannot walk or cannot toilet herself. I will cook for her, clean for her, help her in and out of bed when needed, I will be there when she falls, I will keep her comfortable.
But I will not cart her around my house in a wheelchair and transfer her to and from the commode. And I will not entertain her or try anymore ton carry on conversations and make her smile. I will turn on the "electronic babysitter" and let her sit in her chair and watch TV all evening.
Every evening, we call her to dinner and, even though we start an hour before the meal is served, she usually does not make it tot he table until the meal is almost finished. When she gets there, she just looks at her plate and when I bark at her to eat, she gets a startled look on her face as if she has forgotten that she was supposed to put food in her mouth. Then comes the ordeal of the evening pills.
If/when she comes home, I am strongly considering no longer having her at our family dinner table. I will probably bring a tray to her recliner and then take it away, uneaten, after a while.
I don't think that she has ever liked me but now I am convinced that she hates me. And here I have turned my life upside down for her and my husband and kids have sacrificed so much.
Congrats sounds like such a weird thing to say but... congrats anyway. Yes, she will be madder than a wet hen but you will be in control of when you see her and how long you spend with her so if she is a miserable cuss, you can cut the visit short.
My mother has plateaued in her rehab, partially because she puts no effort into it. The other evening, I visited her and she was particularly out of it and would do nothing more than glare at me. I mentioned it to her attendant on my way out. He went down to check on her and she refused to go to bed (very out of character of her - she LOVES lying in bed). Then she started crying and saying how nobody likes her and I particular, how I hate her. It was bad enough that he called in the psychiatrist who spoke to her and adjusted her meds. The attendant also asked the doctor to order labs and...guess what... no, you will never guess... Yep, you got it. Another UTI.
Two days later and I see much improvement in mood and cognition. Still wacky and mean but not as wacky and mean.
She is coming home on Tuesday, BTW. Incredibly, the rehab center cured her on exactly the same day as her benefits ran out.
I hope you are well and your mom is rehabbing as well as can be expected.
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I have long ago come to the conclusion that my mother will be miserable no matter what. I just try to lessen the degree of miserable.
Our moms sound so much alike even at the point in their dementia. She is miserable and silently blames me for it. Chooses to believe am talking bad about her to people in my hometown but refusing to say what or whom I talked to (I usually don't talk to people from there and when I do it's not about her). Today she wanted to go look at nursing facilities but didn't give me a reason why other than she's in the way here. I asked her would she like to take up even more of my time at a facility where I would need to see if her needs were being met and not being neglected. Her issue is the same-she's miserable and nothing will change it. She's not appreciative of the things I do for her but makes herself say thank you because she knows she should. She recently tried to hit me during an anesthesia recovery and falling uti because I was helping her with a bm depends. She holds grudges, never forgives, talks bad about everyone including us. I know that eventually I will be deciding to move her.
I miss my dad, too! He was wonderful to me and mom was jealous and still is. A pitiful way to be.
We'll figure this out in due time. Thanks to all the encouragers out there!
The past relationship between the two of you speaks volumes of your trying to improve her life, bringing her to live with you and your family, the remodeling of your home, all to make it nice, but she shows no outward appreciation to you. I get it, it's so hard! You may never get the love and appreciation you so desperately need from her, but in your heart, you know that you did your very best!
Only you will know when the time is right, that she needs to be moved to a facility, so in the meantime, you will need to put up those barriers, those boundaries, so that you can live your life, raising and loving your children, showing them the right way, to go about caring for another, who may not deserve all that you have done for her. It's a good life lesson for them, and one they will never forget.
Be sure to explain, all that has gone into you decisions to keep her with you, and the eventual move ahead, whenever that might be. Your kids are your first priority, and showing them how hard you have tried, how dificult it has been, will be the greatest gift you can give them. Life is so hard, when you are caring for such a dificult parent in your home.
My parents did this with my own Grandmother, bringing her here to live with us, when I was only about 10 or 11. It was Awful for my folks, but especially my Mom, as she had 6 kids, (5, still at home), but my Dad made it perfectly clear to his Mom, that his wife came first, his kids 2nd, and she was a distant 3rd, so she understood just where she ranked, in the scheme of things.
My Mom was a saint, putting up with a nasty MIL, living in her home. Unfortunately, Dementia soon came, and after about 9 years, my Nana had to be placed into a Nursing home. She was a very manipulative woman, and played up all sorts of ways, that made it very difficult to continue to live with them.
I hope you find the best way, to put an end to your indecision. I know how hard it is. We've had my FIL with us for 13 years, and finally, we are moving forward with plans to put him into Assisted living. It's h*ll, and the guilt is eating me up, but not so much that I will change my mind. It's time. In the 32 years my husband and I have been together, we have never been alone in our marriage, being that we both brought 2 kids each into our marriage, then when the last one left the nest, my FIL moved right in the very next week, after his wife passed away!
It's going to be really strange, to finally be alone together, I'm not sure how we will even know how to act? Lol!
I do know, it's time, time for us to get on with enjoying each other, our kids and Grandies, and our retirement! Finally, and vacation!
Of course we will still be there for the Old Man, just not in our home. In fact, we might just sell our home, and buy a little Condo, so that we can run amok, and start living again! Music is something that I'm really looking forward to! Ever since he moved in, we haven't been able to enjoy listening to loud music, in the way we did when our kids were young, that I truly miss! I don't know what the future holds, but it's time for us, for you too! You've sacrificed enough! You deserve to be appreciated, to be happy, and free to enjoy seeing your kids flourish into adulthood, and you know that she will never show that to you, at this point! You deserve better! We all do!
This website is my saving grace too! It's so nice to be able to come here and gripe to your hearts content! I know that I do! Lol! That's what we are here for! You will come to a decision soon enough, but in the meantime, gripe away! Hugs Love!
I often wonder if and how my mother processes this as she watches us interact.
Anyway, good for you for raising your daughters without all that drama and with lots of love. We change what has happened in the past but we can learn from it and do better for our futures.
I wonder if we will ever figure out this dynamic of mother/daughter thing. I have 4 daughters, we have no drama. Maybe the outcome of such an emotionally tumultuous childhood somehow helped me. Try not to obsess over what may or may not happen. After all you've been through, you still obviously care about your mom (as I do mine). we just have to let a lot go (easier said, than done!)
Now, in stark contrast, visiting Mom takes effort and as soon as I get there I am planning my exit. My visits are usually 15-30 minutes and I try to take one of my kids with me to help keep the visit palatable.
The difference.... part of it is dementia and part of it is that my mother and I have never, even in her best days, been able to have long honest conversations like I did with Dad. Heck, we don't even have short superficial conversations.
Just thinking about how hard my visits are with Mom makes me miss Dad all that much more.
BTW, add that to the list of reasons Mom and I are not close. Jealousy has always been an prevalent emotion in her and I think she always vied me as "the other woman" in Dad's life. I think she hated how well we got along and how proud he always was of me.
I think that most of her feelings about me are resentment. Resentment that I don't need her. Maybe jealous of my successes and definitely jealous of how close I was to Dad.
Ye3s, right now, AI feel a lot of anger coming from her. I have said nothing to her or in front of her to justify the anger. She has just gotten it in her mind that I put her in the hospital and subsequently in rehab for no reason other that me being mean. And I know that there is nothing I can do about that. She will think what she chooses to think.
I can be "professional" and take care of her despite this. I can do this as long as I have a safe place to vent. And that is what this forum is to me. A place to express my anger, sadness and pity so that I don't bottle it up or take it out on her. I have my husband and some close friends who help me talk things through as well.
I am thinking that the least expensive option while still providing the best care will likely be to bring her home and bring in more help. How much I interact with her will depend on how I feel about her at any given time. I don have the luxury of having a door between her apartment and my house so I could essentially leave her over there with 24 hour care if things deteriorate.
The rehab facility that she is in right now is less than ten minutes from my house and is adequate for what she is there for now. But, the long term care wing leaves a lot to be desired. The food is horrible and I do not see much patient/staff interaction or anything to stimulate. It looks like a warehouse for the living dead. So, I would either have to leave her there or move her to a facility in the next closest town.
I don't hate her. I feel sorry for her. She had so much, been SO blessed, and she can't see it. I know she's mentally ill, and at 87, isn't going to get better.
Therapy is where I learned, and continue to learn why some people are "they way they are". Finally I am at a point where she can tell me to go to H$LL and I say "OK, but I am stopping by Dairy Queen on the way". She is learning that kind of talk just gets a couple weeks of silence from me. Not that she cares, but the rest of my sibs have written her off. She's a lonely, sad old lady hoarded into an apartment surrounded by garbage---of her own choice.
I'm sorry for you. Give it some time. She'll probably forget what you said. (My mother does, anyway)
There seem to be two concepts here that you can't wrap you mind around. (And I don't blame you; these are hard concepts, perhaps more easily seen from the outside.)
1) Your mother may never get back to level she was at before the UTI. It is possible, but not terribly likely. That is the nature of dementia. It progresses -- it doesn't get better. And even if she improves a little in rehab, the dementia will bring her right back to her lowest point -- and beyond.
2) Your mother isn't capable of appreciating you and valuing you. This is terribly sad for both of you. I wonder what keeps her in this state. I feel sorry for her. But this is emphatically Not Your Fault, and unfortunately there is NOTHING you can do that fix that.
To summarize, your mother is definitely going to get worse, and your mother is incapable of appreciating you.
Have you considered getting counselling, to help you understand the nature of your mother's emotional impairments?
"If I put her in a NH, she will be even more miserable than she has ever been and more angry with me."
It doesn't really sound as if your mother's approval is any less important to you now, even though you have accepted that it won't happen, than it ever was before, when you still had faith that it might be achievable.
If I knew *how* one could stop chasing the impossible dream, I would pass it on. In fact, I'd be a rich woman!
M2M your mother is not miserable because of anything you have ever done in your entire life. And she would not be *more* miserable if you detached from her. Her relative happiness and misery are unconnected with you. They are endogenous to her.
But you are still fearful, you still feel obliged, you are still afraid of worsening guilt.
There is a huge difference between writing somebody off, and detaching from her emotions.
That does not make it easy to do. Is this something you have already explored, on your own or with others?
I just want Mom to be back at the level she was before this most recent UTI/hospital stay/rehab. She was able to get herself out of bed most days. She could walk around her apartment. She could dress herself with some assistance. She was capable of getting her own coffee and bowl cereal in the morning (but would much rather have someone do it for her). She could get up and go to and from the bathroom without assistance most of the time but once in a while, she would have trouble getting off the toilet or would have such an explosive BM that she needed me to throw her in the shower.
Most of her evenings and weekends were spent napping, leaving me free to tend to my family and just check on her once in a while.
She could walk to our dinner table and back but needed help getting out of the dining room chair.
She would occasionally ring for assistance getting out of her lift chair because she forgot that it was a lift chair and that she needed to press the button.
What I am not ready for is for her to have to have someone transfer her to and from a wheelchair (her current caregiver is not strong enough for that). I need her to be able to transfer to and from the toilet and I would prefer her to be able to wipe herself.
I need Mom to be able to feed herself and not be spoon fed like a baby bird.
I need Mom to be get strong enough for her to be back at the level where she was (or even almost a the level) before the UTI.
Yes, I am the one who has brothers who are being supported by my mother and are always trying to get more.
I guess my reasons for bringing her to live with me are many fold but part of it was out of filial obligation and flat out concern for her. I knew that she was not getting proper care when she lived in her house with my one brother "looking after her".
It was stressful to have her 40 minutes away and know that my brother was most likely asleep and not caring for her. When she had shingles, she would call me in the middle of the night and scream to me in pain, looking for comfort. She was convinced that she was dying. I felt helpless because all I could do was try to comfort her over the phone. And then, there were the days where I could not reach her and had to decide if I was going to have to drive over to check on her.
I guess I forgot how little we got along when I was a teen and living with her - it had been more than 30 years since I lived in her house. I wanted to be there for her but forgot that she was so hard on me when I lived there.
I also realize that a big part of it was I was desperately searching for her approval and was hoping that she would see me as a successful adult. Instead of her seeing me as her hero, she resents me. I have accepted the fact that I will only be a disappointment in her eyes.
I guess a third reason is out of financial obligation. We just had her ramp put on and the roof over it is about to go up. She has invested in that.
You suggest that if she was in a facility she would be with people she likes better. I don't think so. she hates "old people" and would never socialize (she has never participated in anything in any of her previous rehab stays and chooses to eat in her room). She is now convinced that no one at the facility can be trusted and when I press her for an explanation, she says that they are going to take her. Take her where? I ask. She responds: to the basement. (there is no basement).
If I put her in a NH, she will be even more miserable than she has ever been and more angry with me. I would either worry about her more and take more precious time away from my family to visit her or I would write her off in my mind and abandon her there. I don't see middle ground.
I don't understand why you ever did all of this for your mother (bought another house, extensive remodeling), since you say she's always been manipulative. (Maybe I'm not remembering correctly, but aren't you the one with the do-nothing brothers, at least one of whom scammed your mother out of money?) I think it's time to move your mother elsewhere. It's obvious that you don't like her much (and that's okay! I don't like my mother much, either). She would be better off somewhere else. Maybe she wouldn't have the creature comforts she has at your house, but she would be with people she likes better and it would be so much better for you, too.
mom2mom, have you heard the expression "throwing good money after bad?"
And your investment will not have been wasted if you can easily rent out the apartment.
What is keeping you on the fence?
I found and purchased our current home specifically for the attached apartment. I remodeled it to suit her needs and moved her in in March 2015. My husband and I are on the deed and mortgage and Mom is a tenant. Her "rent" is based
on the difference in mortgage from the old house to new - $800/month.
The caregivers are paid for out of Mom's money. She buys all food and products that are specific to her needs and we share other food such as evening meals.
I could not find the right word. Frugal is not it. The remodels were/are very expensive and high end. Mom and I have split the costs. What I meant to say is that I am cheap and I hate to have spent all of this money and have it not end up being used for its intended purpose.
Yes, it will greatly enhance the resale value of my home which is why I contributed to the remodel. But, I don't plan on moving again until after the kids have gone off to college. If Mom moves out (or otherwise leaves us), her 79 yearn old caregiver would probably rent it from us. She loves the apartment, loves our family (mutual) and her daughter lives in our neighborhood. She has already expressed an interest.
I have to brag about the bathroom remodel. There is absolutely no lip going into the shower. If she gets to the point where she can't walk, we can roll her into the shower and transfer her to a shower seat. The shower head is fixed and there is a separate hand held head. I am very proud of the design and it looks like a spa (well, a spa with a raised toilet seat and grab bars)
Did you talk to an elder law attorney before the purchase about how to set this up? At least if the house needs to be sold,sounds like you have done a nice job with the remodel, HC accessible houses are very hard to find so should sell easily and quickly.
Before this last incident, I was strongly considering weekend care during the day and now I am trying to figure out if the finances will allow me to have people here from 8:00 AM until 9:00 PM (her usual bedtime) every day of the week.
I still think I can handle the overnight shift since she has been pretty good about sleeping through the night lately (knock on wood).
I am fortunate that Mom is in a 1300 square foot apartment with a full kitchen, washer dryer, handicapped accessible bathroom, etc. We even just put a handicapped ramp on at her entrance so she no longer has to navigate the 3 steps. The home was bought with the sole purpose of her living here as long as she can.
I guess part of my stubbornness about bringing her home is plain old simple frugality. We JUST put the ramp on. And it is a fancy ramp, with a porch and steps off to the other side. The roof over it is going on next week (the trusses were delivered yesterday). The project is almost $40,000. Just before Mom first moved in, we had the bathroom remodeled to include a zero entry shower. The bathroom remodel was $16,000.
I have invested a lot in this house just to make it comfortable for Mom and the thought of it all being for naught would drive me crazy.
I know that is probably not a good reason to bring her home but it is not the only reason so this is why I am so on the fence.
I had a caregiving in every day for at least 4 hours...usually 6 or more.
I would never have been able to deal with him without her. She was the best. Dad really liked her, and she got cooperation and a pleasant response..something I never got.
If you can afford this...go for it. You could have the caregiving in at the time mom usually gets up in the morning. And stay through lunch. Then back about 4 pm to be there thru dinner and bedtime.
Believe me, you and your mom will quickly come to enjoy the little time you are around each other more.
I do know that if I bring her home, it will be cheaper than being in a NH, even if I have to bring in 24/7 help. She has a fully functional one bedroom apartment attached to my house so I could always just close off the adjoining door if she gets to be too much but then open it when we want family time. I already lock the door on Wednesdays because the Wednesday caregiver is a nosy gossipy sort and I don't want her to wander through my house.
I just got back from visiting Mom and she repeated that she wanted to go home. She acted a little less angry and mean tonight. She actually interacted with me instead of ignoring me. Her conversation didn't make total sense but her demeanor was better.
Why put yourself through it? For whose benefit?
Your mother is being foul to you. She has, oh, more reasons than you can shake a stick at - not least, of course, that the dementia makes her less able to gauge the impact of what she's doing it, and anyway she's probably past caring about such niceties. She's mean to you because she can be, because you'll take it, and she feels like being mean because she's old and her brain doesn't work and she's stuck in smelly rehab.
So I'm not blaming her, but even so I really can't see - what's the upside of her being in your home, and for whom? Better care? No, they're taking good care of her. Better quality of life? Not if her main pastime at home is kicking you in the pants.
And, besides, eventually she won't be able to walk or transfer. Eventually she will need full-time full-on nursing. Won't it be better if that's coming from people she already has a relationship with?
If she were pining and crying or fearful or lost, it might be different. But she's compliant and content - until you show up, and get bitten. Isn't it time?
I have told Mom my conditions one on one and in front of the rehab staff during our first care meeting. And, no, I am way more tactful. I did phrase it as I am not able to provide that level of care and need her to be able to walk (with a walker) and otherwise be somewhat independent with her toileting. I did not phrase it as a threat but as an answer to their question to me about what I need to see from rehab. I am willing to continue to assist her with the toilet (help her get on and off when she is feeling especially weak, clean up massive occasional BM explosions as I have done in the past). But I am not prepared for her to consistently soil her depends and be unable to do anything for herself.
I describe her dementia as mild to moderate. Her PCP sees no dementia at all, only some slight memory loss. I have explained to him that she is showtiming and she is worse in the early morning and evening and basically, whenever she is alone with me.
He keeps telling me that she does well when tested in h's office. Well, I think he had an eye opening when he went to visit her in the hospital on day one because one of his first comments to me was that he is increasing her Namenda.
I do think I need to get her an assessment by a specialist and get an official diagnosis because I may eventually need to seek guardianship for her. (I have financial POA but she never signed the Medical POA)
Sunnygirl, I am willing to re-evaluate my feelings and comments above but I don't see any of this as my punishing my mother. I am learning a new way to cope. I can be an efficient caregiver and continue to be kind to her without being "loving". I am not trying to punish her by saying that I won't sit and visit with someone who spends the whole time giving me the silent treatment and glaring at me. Deciding not to spend then time with her is not punishment but self preservation.
I do not think that her manipulative behavior is related to dementia except that maybe it has removed her filter. My mother has been manipulative her whole life... well, at least my whole life.
If this was new behavior related to the onset of dementia, then I would be a horrible person for blaming her. No, this is who she has always been. She has always pitted my siblings and I against each other in some crazy plan to control us. She will blurt out some embarrassing anecdote from my childhood to my husband or when she meets one of my friends. Now it is "she mistreats me" to everyone she meets.
If that last line was new, then so be it, it is the dementia talking. But, it is just the most recent variation of her attempts to make me look bad to others.
"I will cook for her, clean for her, help her in and out of bed when needed, I will be there when she falls, I will keep her comfortable." NO. Don't even do these things. As gladimhere states, tell the rehab center you cannot provide the necessary care for her to come home.
You state that your mom has dementia. Has she been diagnosed by a doctor? Have you discussed this condition and its progression with her doctor? Based on your comments and assumptions about the behavior of people with dementia, I'd do a lot of reading about the condition. I would highly recommend watching the Teepa Show videos on You Tube about Dementia care. (I'll send you a link by PM.) They explain and illustrate how the brain that is experiencing damage, causes people to act and behave in unusual ways. They may look fine, but, they are not. That's why they may refuse to speak or they may say things that don't make sense.
Manipulation is really not something they can conjure up with their brain damage. Plus, it's not helpful to assign blame or consider that they are being angry for no reason. Punishing someone with dementia is really not helpful and I would consider it cruel. I beg you to reconsider doing that. We can't know what is going on in their brain, but, it is likely jumbled, confusing and outside their ability to control.
If she looks like she has forgotten to put food into her mouth, then she has. She needs care and possibly hand feeding or assistance. I might ask the Rehab to have her swallowing assessed, if she's having trouble eating, as the loss of the ability to swallow will come eventually, as does the ability to walk and toilet themselves.
Often family members make great sacrifices to care for their loved one and that is admirable, but a person with dementia cannot be expected to behave normally, show appreciation, demonstrate mature behavior. In many ways, they are like a child themselves. It's like caring or an infant eventually.
If I had had trouble, I'd ask the Rehab where she is to help you find a place where she can go after her release to live. They should be able to do an assessment to determine the level of care she needs, such as a regular Assisted Living, Memory Care or Nursing Home. And if you do take her back into your home, please explore getting outside help to come in and help you. This is a terrible disease and it can be very exhausting and stressful to care for a patient in the home, so, I would reach out for help.