She has been in AL for almost 8 months and still not adjusting. She's always been a depressed/difficult person. I have taken all of your advice to keep my visits down to once a week and to excuse myself when the conversation starts going sideways.
Lately the conversation is sideways as soon as I sit down to visit. Recently my brother and I decided to see her attorney to find out where we stand legally to sell the contents of her side of a double then fix the double up and rent it to help with payments for her AL. Initially she agreed to this but with her dementia, she forgets, that's why we checked w/ attorney.
Anyway She wants to go over and get some things (nothing is there and it will soon be rented). She wants us to take her places. I don't have a problem doing that but am scared she will want me to take her to her home and then I'll never get her out. In the past when we brought her to our home, she is very bitter, angry and makes a big scene My husband is not comfortable around her. We have been married 44 years, and he has never cared for her or how she has treated our sons or me.
So question is, when she wants me to take her to her place, after a country drive or ice cream stop, what do I do? This is every week and I always use the excuse I have to get home for such and such, it's no longer effective. I am tired of arguing every single time I go to visit her. I know she needs to be there, but I feel terrible. I know I should not, but aghhhhh! I DREAD going to see her anymore and have to pray just to even get the gumption to go over there. That's horrible on my part! HELP!
I had repeatedly tried persuading him to move out of their first floor flat (I think it's known as 2nd floor in America), as it doesn't have a lift. He dug his heels in, even though it was necessary and I had proposed that they just move to a ground floor flat when one became available in their sheltered housing complex.
Then, earlier this year, his hand was forced when Mum went into hospital and they refused to discharge her because she wasn't capable of using the stairs. There was talk of placing her in a home, which my stepdad really doesn't want.
Mum's social worker helped facilitate the move to a flat in a newer, larger retirement complex with a care company on site; a restaurant, bar and hairdressers; social areas and a lovely communal garden; plus different activities going on several times a week.
He hates it. Every time I visit he tells me how miserable he is there, that it's the worse place ever, and that he shouldn't have let me push him into it. He said he should have installed a stair lift for their old flat (an impossibility in the large communal stairwell of the building), which did make me question whether he is also experiencing cognitive decline.
The new complex isn't perfect, but it is a lovely place - far better than I will be able to afford in their position. Yet he had got used to working around the niggly little problems in the last flat and he's now of an age where changes are worse than unwelcome and the new niggles in this flat seem huge and insurmountable.
His negativity and refusal to try anything to make his situation better, along with the constant complaints and fault finding of me, are wearing me down. So, I don't visit as often as I used to. I've taken a step back, which hasn't gone down well, but I have had to for my own health.
Even without having dementia, my stepdad has found it difficult to settle into his new home and the repeated refrain was almost like he was saying he wanted to go home, even though he had the wherewithal to understand that wasn't possible.
I think it's as much to do with having an inflexible attitude as it is to do with having a cognitive impairment. After all, dementia can cause a person to lack flexibility; you can't adapt or change when you are no longer capable of learning.
(Sorry, this is a bit long winded in getting to the point. I just wanted to explain my thinking.)
That same year I'd had spinal surgery and struggled with the stairs whenever I picked up shopping or their prescriptions. I pointed out that, as the only one of their children helping them, I also needed them to be on the ground floor or in a building with a lift. And it would mean that Mum could get out and about more, which would help with her rehabilitation.
But no - he didn't want to, and what he wanted was paramount.
Now, my step-sister visits regularly and helps more than I do. I did feel guilty, but I'm getting over it.
It must be very sad to see your dad change so much, and no longer the man you knew and loved. And for your mum, too.
You are doing absolutely the right thing, protecting both your parents. I hope that it all works out for you and your family.
I have the same worry when I take my parents out or to a medical appointment etc… . This is where I might start hiring someone who can join them on these appointments. The difficult part is both have dementia and I usually attend their appointments in the office with them. I am not sure how that would work with an advocate there.
They actually chose their unit after looking at several other assisted-living situations. I am currently dealing with taking care of all of the things they let go over there he years. It’s a great big mess.
I have been advised by an adult protective service investigator who had met with my mom after an alleged allegation of abuse by my stepdad, that I should become the guardian. She let me know that anytime, if the right person came along, they could advise her to take me off as POA, and go back home. I am in the state of Washington. If I were the guardian, I would have more power. However, this is the last thing I would ever want to do as it is very costly and time-consuming, and from what I’ve heard, involves going to court along with your parent.
she also advised me to get an advocate who could help by taking my parents to their medical appointments, shopping, checking up on them, etc. I am pondering this idea.
All I can do each day is hope and pray that things go the way they should as I know they are where they need to be to stay safe.
Like you, My mom is also very angry at me because she wants to go home. She does tell me this now every time I see her and she does it in a very hateful way. Yesterday when I told her I would talk to her tomorrow, she told me “don’t bother”. Well today, I didn’t bother. And what a weight it was off my shoulders it was!
I hate to say it, but I am ready for this to be over. What ever that might mean.😪 😭
I am experiencing the same as you and others, with my 95yo mom. She's been living alone since her husband passed in 2016, in a much too large house and few friends, no relatives to help her. I live out of state and desperately tried to get her to move closer to me or at least into a smaller facility/preferably a type of assisted living facility, but she dug her heels in and wouldn't budge.
Fast forward to last November when she fell in her home (found out this was the 4th or 5th fall of the year) and she ended up in the hospital with 8 broken ribs and a punctured lung. Fortunately, I was visiting and called 911. She fell in her bedroom after losing her balance and I woke up to her screaming. In the hospital she was delirious from the pain/pain meds and experienced horrible hospital delirium. Said horrible things to me (only child), wild stories, etc. Her doctor referred her to a rehab center a month later. She was in rehab until March this year, didn't get a lot accomplished. Hasn't walked on her own since she fell. She's now in the Long-Term section of the facility and has turned into a real bear.
Dementia has set in hard, most likely due to the fall. She also hit her head. She is telling tall tales and insisting I take her home or she will "disown me, make me regret it, you'll be sorry, as soon as I have pen to paper, you're out of the will, I'm revoking the POA", etc. She has no other family to help her. Her half-sister won't come visit or help in any way. I've asked. She lives out of state, as well.
I've been out to visit a lot since her fall. I missed all the holidays, husband's birthday, staying out here with her 4 of last 6 months. I've finally decided I too, need to stop feeling guilty and start taking better care of myself and MY life. My mother harasses me about her going home every visit. She's verbally abusive. We've butted heads a lot. Two strong personalities. She never forgave me for moving away, although I left home at 18 and never lived in the same place as her again. She worked and moved around but felt I always should've lived closer to her. Yet, she wouldn't sell this house and move closer to me. Refused every suggestion I gave her. Meals on Wheels, Life Alert, Assisted Living, etc.
Anyway, apologies for the long post. I guess writing all of this down is cathartic. I hope you and everyone else here with this problem have more better days than not, with your loved ones. I sincerely empathize with you all. This is a horrible disease and so difficult to watch a once vibrant, intelligent person turn into someone you don't recognize. As much as my mom and I butted heads over the years, I sure do miss her. Best of luck to us all!
If your mother is permanently in long term care, her house has to be sold.
You have your POA and she has dementia. So you can sell her house or any other property to pay for her care.
There's nothing she can do other than rant and rave and carry on. So limit the visits and cut the phone calls short.
You're not doing anything wrong here.
Well, I made the mistake and fell for it and did take him back to his house. We still have his house, with things in it, have not got around to start to clear things out.
FOr those following my posts, they already know that my dad had been incessantly bugging me about moving back home. However finally in the past 2 months or so, he is realizing /getting resigned to the fact that he will be living in a facility from now on. HOwever, he was bugging me to "take him back one time to get some clothes and things he wants to bring to the AL". The aunts and uncles were then calling me and saying "just take him one time", since he was bugging them and telling them I wont take him. It seemed that getting clothes, a few things and photos seemed reasonable. My dad said it would "just take an hour". Well, we were there for 4 hours and it was hard to get him back out! He went through clothes, shelves, old things, started to go through old photo albums (I said, "why not bring some back with you and go through them at your leisure?" He replied " no they belong here and I want to come here once in a while to look at them"). Then he asked " Do you ever think I'll be able to move back here?"> I answered "no". Then later he said "I will one day figure out a way to move back here".
In hindsight it was a mistake and it set him back for a couple of weeks from the progress. He wanted to go again and look through more stuff within "1-2 weeks" but I have not done that and he has dropped it for now. I wont take him back any time soon. So that's the cautionary tale.
So, as others have advised, you can take her out for lunch etc if you want, but don't go anywhere near the house, or she will recognize that you are close and want to go. Perhaps just go places in the opposite direction!
It always causes setbacks when a person is taken out of AL to go back to the home they left.
You said that your mother can be horrible to you, and that she has frequently put you down, long before her dementia took over. Stop being your mum's (emotional and mental) punching bag!
I love my mum and, unlike many of the accounts I read here, cognitive decline has (for the most part)turned my mum into a sweet old lady.
Yet I have always loved her, even when she was a bit of a cow; I actually like that she had a hardness to her. But, I was truly hurt at the times she was thoughtless and unfeeling towards me. I protect and care for her, when she hadn't always done the same for me.
Now, I have stored up those memories and use them to help harden me, so that I don't feel as guilty as I used to, when I can't do everything for my mum and I can't make her life any better.
I suggest that you do the same.
We're not miracle workers - there should be no guilt and no dreading unreasonable demands.
You deserve to live your own life in peace.
I used such fibs with my Mom (97 yrs old) when she was in a nursing home. She wanted to visit her parents, so I told her "they are visiting the old country" to which she smiles and said that is nice.
That's a good one about repaving the street and visiting the "old country".
You say that after 8 months she's still not adjusting to AL. How do you know this? Have you talked to the staff? Or sent someone she doesn't know in to observe her?
I was a supervisor in a high-end AL facility. I saw with my own eyes residents who did very well and actually enjoyed life in the AL. There was always some activity or another going on.
The second one of their family members called or showed up, the change in them was like flipping a switch. They'd go from being content and having a good day right to the demanding and begging to go home. Then the crying, the misery, the negativity, and the orneriness would follow. The minute their family member was out the door or the phone was hung up, they went right back to their content, good day.
You maybe should give yourself a few weeks off from visiting. Call once or twice a week instead.
Would it be possible to hire a companion for your mother a few hours a week? Someone who can take her out and spend some time with her? She might like it.
Whenever she brings up the going home, ignore it. Refuse to engage in any conversation about taking her back home. She is home. The AL is her home.
Turning back and walking out is exactly what you should do. I remember a resident at the AL I worked at. She complained constantly about the food (which was gourmet). She'd be laughing with her friends and the second her daughter showed up, she'd start with the negativity and complaining that she was starving because she couldn't eat the terrible food we were serving.
One day her poor daughter (who was a friend of mine) just lost it and started to weep. So I called her mother out in front of her. I asked her why she went up to the buffet (we had buffet meal twice a week) three times if the food was so bad.
She got angry and took her daughter off the visitor's list for a few weeks (which was a blessing to her because she got a break) then she stopped complaining so much when her daughter started calling and visiting again.
Tell your mother if all she's going to do is complain when you visit, you will stop visiting.
As you know legally how to proceed - and good that you went to her attorney - then you do what you need to do.
She may or may not cognitively understand "we need to rent out your apartment to pay your bills." I would tell her this once - perhaps twice and then stop. Period. Do not argue or explain.
And, when she wants a 'side trip' when you take her out, say "No, I need to get home ... I have an appt." Do not argue.
You are in charge.
You are doing this for her.
She won't understand and she WILL react as she does. When she starts in, leave. Tell her you have to go now. Do not keep this 'conversation' or listening to her going. Say "I understand how you feel." Acknowledge her words and then change the subject. Or leave.
The key is ... you have to keep yourself emotionally and psychologically together. Do not allow her to exhaust you (any more than you may get / be... it is hard) Put yourself first... learn how to renew yourself (meditate, gardening, lunch w friends, listen to music ... whatever you need to do to renew yourself is essential). Glad you cut down on visiting.
Perhaps try to find volunteers to visit her. Sometimes you can find through college depts (social work, geriatrics, counseling) or volunteer organizations.
- Mom may benefit from others - being alone or feeling alone / lonely. It is worth a try.
- Get her out and among other residents. She may HATE this... do it anyway. Stay with her the first few times... a volunteer could encourage socializing, too.
Discuss medication if you feel it might help. The facility nurse / administrator / dept manager could help you decide how to proceed.
Gena / Touch Matters
A sad-to-smile playlist to sing to on the drive home.. a refreshing walk, a soak in a bath, time with a pet.
In short: be kind to yourself 🩷
Unfortunately, it was advised to not take him out to go somewhere because getting him back would be near impossible. I wanted badly to bring him to a family's house when he was more mobile for holidays or for a drive but because he was so out of his mind, I was fearful I wouldn't get him back in the car or worse, I was worried he would try to jump out of the moving car.
This disease is AWFUL. It's the worst thing to have to see your loved one decline month after month, year after year. If you think your mom can handle going out, by all means, take her out for a fun afternoon and reminisce. That is really good for the soul and helps you to keep creating new memories. I would, however, advise you to not bring her to her old home. You may not get her out and it would be more traumatic on the both of you to have to go through that. Best wishes to you and your mom on her journey.
Seems we are all in the same boat. We also are the first generation at our age to be taking care of our parents.
My guilt sometimes is due to the fact that the people who take care of mom all day are so wonderful that they must think we are selfish and uncaring.
They are however, always caring and telling me just to do what I’m doing and that they understand. The guilt and sadness still prevails.
We’re all in this together! I’m so thankful for these posts that keep us knowing that.
Be kind to yourself.
I and all of us dealing with this horrible disease can relate to all you say. Reading these responses has also helped me realize that we are all in this horrible sinking ship together. Please don’t let that ship sink you as it’s done me for the last 10 years. I have aged tremendously this past 10 years, trying to take care of her and others in the past. My daughter was murdered. My brother was killed by a train, and my father was also killed by his younger than me wife. All of the stress, my own physical problems, surgeries that have permanently damaged me, and now dealing with her is going to be the end of me. I honestly don’t know how I’ve made it this far. I have no one to help me at all. All of my close family has been killed.
Even though I already know all of these things about this awful disease, reading others replies still helps.
I also need to post it on my refrigerator, my bathroom mirror, and even my bedroom wall to remind me to stop feeling so guilty and stop worrying. There is nothing that we can do to make them happy.
My mother has always been a narcissist and nothing you could ever do even before she had dementia would make her happy. She was never satisfied. I have spent my entire life, taking care of my mother in so many ways. I am not exaggerating either. I feel like I was born to be her slave. She is the most difficult and most complaining person I have ever known in my entire life. She is 83 years old and I am 65. I have terrible health issues myself. My mother has destroyed my mental health. I actually considered “ending it” myself just to get away from her. I am not kidding about that either. My fear is that I’m going to end up like her and that terrifies me because I have all of her health issues on top of my own. It’s like I have inherited all of her problems. As far as physical and mental.
Thankfully, I feel I have more common sense and compassion than that woman has ever had in her life. Just as others have said she is fine until she sees me. As soon as she sees me the complaining starts and she says she wants to die and this is not worth living. Of course I do agree with her on that. Then she says I need to stay with her all day every day. Obviously I cannot do that. No matter what you do for her it’s not enough. She goes to the bathroom every five minutes. I am not kidding. She refuses to let anyone give her a bath, so I do it as often as I can. She gets frequent UTIs.
I actually had moved 1000 miles away to get away from her trying to have some time to grieve for my daughter, She would call constantly and tell me I needed to come back, then two years later she got dementia so I was forced to be drawled back into her net. I am angry, resentful, and feel guilty for feeling this way I am all she has. There is no other person to help her. It’s hard to even go see her. I do feel terrible for her, but there is nothing that anyone can do for these people who have dementia. I seriously think that I am losing my own mind.
So please like everyone has said you need to take care of yourself there is nothing you can do for your mother. I am hoping that somehow I can get out of this drowning mess that I’m in before I die. Her grandmother lived to be 99. 🤯
It isn't too late. Just stop.
Live for you.
If you can't afford counselling, look for bereavement groups first, then see if there are any other forms of free or reasonably priced counselling or group therapies in your area.
I am so sorry for the loss of your daughter and other family members.
If you have thought about ending your life, then what's the worst that can happen if you stop contact with your mum and start living for yourself? It couldn't be any worse than dying.
You and I would hate to never leave during the day, but with dementia, their minds aren’t rational anymore. They could go out every day but immediately forget it happened.
I need to make my own post so I can get more specific help with my husband, who is in long-term care and probably won't ever be safe to come home. In the meantime, know that just hearing those words helps. I can use those words with him.
I have limited my visits with her because when it is time for me to go, she gets upset, so I've had to be quite creative (I have to get back to work, I have an appointment to get to, etc.) and I have relied extensively on "therapeutic fibs". At first, I felt horrible not being truthful, but truth is relative. The real truth versus her imagined truth. So we do and say whatever we need to make her feel comfortable and less anxious. I do take her to the dentist and certain doctor appointments that cannot be addressed in the community (they don't like the word 'facility') and upon returning, she wants to know where we are, what is this place, etc. I tell her she is having dinner with her friend Sandy (another resident who is not as progressed in her memory issues as mom). When she asks if I'm staying for dinner, I say, "no" BUT... I'll be back later to pick you up and take you home. Five minutes (or less) after I leave, she has forgotten that I was even there.
I beat myself up for awhile before making the decision for memory care, but I had to put her safety and security ahead of my emotional turmoil. Now that she is there, I am feeling myself again, my husband and I can do things together without having to worry about falls, wandering, telephone calls every five minutes, and so on.
I now ask myself, "Why didn't we do this sooner?" The signs were there, but I felt I was not doing my "job" as her daughter if I wasn't able to keep her home and allow her to "age in home"... but it became more of a risk for her and a mental and emotional nightmare for me. She did live on her own, but I had companions come during the day and a couple of evenings a week (on the nights we didn't go over to have dinner with her and visit). I had handrails installed in the hallways, cameras throughout the home and outside, the bathroom remodeled with safety grab bars and the tub converted to a low curb, step in shower. But in the end, it all boiled down to her safety. When it was obvious that all that had been done to make her home safe, but it still wasn't enough, we had to make that difficult decision. So my takeaway is this... You HAVE to consider your life as well, You have to put safety over emotional martyrdom, It's ok to tell them what they "need" to hear to remain calm and happy (or at least not anxious). Just hold her hand even for a brief moment, don't forget to say, "I love you, mom (or dad)". Dementia has taken the person you once knew as a vibrant, intelligent, thriving person away. They can't help it. They hallucinate, hear things, believe things and mash together things from the past and things that may have happened recently. It is the progression of the disease. Sorry for the long post, but it has also been therapeutic for me and I hope that some of my insights may help someone.
My favorite game is ...
And just continue to change the subject.
Never, never, never take her to the house she will cry, throw a fit whatever and then you will feel bad.
When you visit her take a photo album of her relatives, reminisce about the good ol' days. Let her tell you stories of those days. Eventually you will not be able to take her for a ride or ice cream however enjoy while you can and let me repeat DO NOT TAKE HER CLOSE TO THE OLD HOUSE.
Prayers for you and yours!
When she started carrying on, I'd tell my mother I was leaving because there was nothing I could do for her and it wasn't my fault she was in the condition she was in. I suggest you do the same. And stop catering to her every whim, too. Stop with the drives and this and that. Bring her an ice cream and leave it at that. Do NOT take her home, period.
When the DOCTOR says you can go home, then we'll talk about it mom. Until then, there's nothing I can do for you,
Some people w/o experience in these situations will come along and try to guilt you into taking her home. Don't do it. Get her appropriately medicated and calmed down, and then plan your visits for right before a mealtime....so you can get her settled in and then amscray.
My mother saved all her angst for me. When I wasn't around, she was doing fine, participating in activities and schmoozing it up with the others. As soon as she saw me, her face drooped and the complaining began. To hear her tell it, she was being starved and ignored.....at 190 lbs and looking clean and fresh. It's an act and the goal is to make you feel terrible, make no mistake. Call the staff to see how she's REALLY doing.
Take care of YOURSELF too. Mom is safe and properly cared for now. Dementia is a no win situation for all concerned, in reality. Don't beat yourself up for something you have no control over.
I feel your pain, I went thru it for almost 3 yrs with my mother until God mercifully took her at 95. That's when I finally felt relieved, tbh.
I like your advise, call the staff. great idea!...Mom says no one socializes with her and she has no friends. truth be told, she has always been a difficult/critical person. She's only nice to me when she wants something.
Everyone made many good points today. I think ill print them out for instant encouragement as needed :)