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Mom is 85, has lived in her home for almost 55 years, and has always been very independent. Last year she was hospitalized with a pulmonary embolism and also treated for a detached retina. Now, she is generally in good physical health, but suffers from dementia -- long term memory is great but short term is getting progressively worse and occasionally suffers panic attacks.

I'm her single son and have been her primary caregiver for almost two years -- managing her finances, making sure she has and takes her medications, doing yard work, grocery shopping, bringing meals, taking her to doctor appointments, etc. (all the stuff caregivers are familiar with). I’m so burnt out emotionally, mentally, and physically that I don’t know how much longer I can keep this up. My older (divorced) brother helps out some, but I feel like it is all on me.

We brought up the idea of moving her to assisted living late last year, but she wanted NO PART OF IT, so we dropped it. She also does not want any outside caregivers coming into her house to assist her. Nevertheless, I knew the day would eventually come when she would need help, so I did a lot of planning over the past year in preparation for this event including evaluating different assisted living facilities, putting her name on a waiting list, getting her finances and estate planning in order (including Living Will, DPOA), etc, so we would be ready when the time came.

This past summer after a panic attack SHE brought up moving into assisted living and wanted us to make the move before winter arrived. She said she would not fight us on this issue and if she protested, we should ignore her and continue with the move. This was a HUGE day for all of us!!!

Over the past few weeks she would ask when she was moving into her new apartment and I would show her on a calendar. On moving day, she was ready and willing to go. She has been in her new apartment for less than a week and every time we visit, her first question is always “when am I going home?” She gets so very angry with us and so worked up that we have to get assistance to calm her down. She cannot take care of herself at home and we can no longer provide the care she needs (even though she does not think she needs any care).

My brother has taken a more active role in her care now that she is in assisted living, but I still feel emotionally, mentally, and physically spent. I’m not sure if or when mom will accept her new living arrangements or where I can turn to for support/help for her or me.

Any assistance is greatly appreciated -- thanks in advance!!!

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Perhaps you could visit less and give your mother a chance to settle in without the disruptive scenes with her sons. Have you talked to staff? Is she OK between your visits? I understand that some care centers recommend that family not visit at all for a certain period -- 10 days or a few weeks -- to allow a settling in. I don't know if that is always the best approach, but since what you are doing now doesn't seem to be working, maybe less frequent visits to begin with is worth trying.

My heart goes out to you. You are doing the right thing, and the thing that your mother asked you to do. It must be very hard to see this result.
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My mom ended up in a nursing home due to her broken hip, but she did not work with PT in order to regain the ability to walk again. However, her overall health is much better physically than it ever was at home, but the dementia continues to worsen. She very often asks when she can go home, but I tell her that while that would be very nice the doctor does not consider her a safe discharge. I think it is good that my mother thinks she has been there only 4 months when she has been there 4 years. She complains about being bored, but does not go to any of the activities. She would be bored at home too. I have heard of people with dementia going home and then when they got there asked to go home.

I shared all of this to say that jeanngibbs has given you some good advice. She may or may not reach the point where she no longer asks to go home, but that is beyond your control. All you can do is take care of yourself and be supportive of her where she is which it sounds like is where she needs to be plus she asked to go there. People with dementia have a hard time adjusting to new locations and this is possibly what is going on with your mom. It is painful to watch a parent decline, but try to hold on to the good memories of her. Be glad for simple things like her still recognizing who you are.

It is good that your brother is taking a more active role now. Take this as your chance to recharge from being so drained.
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Thanks so very much jeannegibbs & cmagnum for the comments and advice. This was my first time posting and it made me feel better to know that I'm not alone in this.

Even though it may be hard to do, we are going to try and give it more time between visits and hope that she develops a new routine/attitude. The staff has indicated she is visiting the cafeteria for meals, regularly, and is venturing out of her apartment to sit in the main common area with other residents to observe, occasionally striking up a conversation.

Thanks, again!!!
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My mom talks about going home every single day so I understand the stress that this causes. Some days she asks to go home, other days she begs to go home and some days she demands to go home. I have been visiting her everyday since she entered Assisted Living 4 weeks ago, but I am skipping today. The staff says she is okay when I'm not around and I shouldn't worry so much, but she calls me crying and begging. Then I find out that she is perfectly fine with the staff. It is very frustrating and I wish I had some good answers for you. This is a journey that we just have to learn as we go and make the best decisions we can.
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It's so nice to see someone who wrote something 6 hours ago.......My mom went into assisted living in August and it's been a nightmare. I did the same thing you've been doing, visiting every day, and the staff tells me she's fine when I'm not there. I have started taking days off here and there, but the guilt is killing me. I feel so bad leaving her there. Every one tells me that I've done the right thing........but that look in her eyes when I try to leave is horrible.....The staff is wonderful.......the nightmare isn't the place, they're great. It's that she wants to go home. Unfortunatlly home happens to be 26th and Wells in Chicago where she grew up.......I'm taking tomorrow off which will be a big deal for me. I can tell you this........when I go back after missing a day, she never even mentions that I wasn't there the day before.......just happy to see me and sad when I leave. Good Luck......let me know how your day off went and I'll write back and tell you how my day off tomorrow goes for us........Journey....yes!!!!!
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We've decided to hold off on seeing mom for a couple of days and then meeting with the AL staff prior to visiting her to see how she responds . . . never quite sure how she'll react when we see her, but hoping for the best. It IS a journey and we do the best we can . . . one day at a time.

Good luck abby33 and Susanbartusiak; take care of yourself!!!
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Took off yesterday and went back today......she was fine when I got there....didn't remember too much about yesterday. Same thing today when I tried to leave.......The staff thinks that I should start coming every other day. I was there on Monday for the Halloween party, and she focused on me. They think that if I wasn't there all the time she'd participate and join in. Sooo hard....it's my mom, ya know? I'm taking off tomorrow but going on Saturday and Sunday........Take care all!!!!! Our prayers are with you :)
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Anyone in the Chicago area?
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All the comments and advice given has been great. Wish I had read this in the fall of 2012 when my mom was moved from her home to a ALF. She has never adapted and still hates it. Her dementia is getting worse and she takes most of her wrath out on her daughters. I live out-of-state and visit 3 to 4 times a year spending at least 8 hours a day with her. Last fall, every time I had to leave her till the next day, she would start to say 'what do I do now--what's the point--there is no one here to take care of me if something happens, etc. Will be visiting her in less than 2 weeks and for the first time I'm not looking forward to it. So sad.
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My mother has been in an ALF since 12/4/2014, just about 4 1/2 months now. She definitely has me in the crosshairs for blame, anger, rage, frustration and abuse. My brother and mother disowned one another about three years ago over money. My mother's two loves are money and men. She has a boyfriend in the ALF and rages daily about not having access to her money. She has AD and her disease manifests (for now) in her inability to formulate and execute a plan as well as short term memory and problem-solving. She is convinced that my input at her Dr. appointment is what led to her diagnosis. She "knows" that I went to the DMV and had her license revoked. Who knew I had such power huh? It's taken me a while, but I have come to a place of letting her live her life herself. I don't own any of her blame, it's nothing I did that put her in this place in her life. She is living her lessons, this is her life and her experience. I have her in a very nice ALF, she is safe and well-cared for....I shop for her but I ship the items to her (I live 40 miles from her ALF). She then gets the items she wants but I don't have to fuss with her at the store or listen to her berate me at the ALF. This is her journey and I'm done getting in the way.
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This is what I call the ALZ DEMENTIA MANTRA: GO HOME GO HOME GO HOME...It finally stopped with my mom when is stopped talking......I moved her in ahome about 2 years ago,, iti's never easy. I didn't see much help with Aricept and Namenda, especially when it gets in the later stages.
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I can completely relate to your story. I am an only child (daughter), my parents divorced when I was young, and I moved away from my home state several years ago. I started noticing memory issues with my mom a few years ago, and have gone back home to take her to routine doctor appointments, and to broach the subject with her doctor. My mom was in complete denial then, so I didn't press the issue.

In 2013 I received a panicked phone call from a family friend that lives in my mom's development stating that my mom was "seeing things" in her apartment and was afraid. I called my mom and she confirmed the story. She sounded like a scared child. After breaking down for a few minutes because I didn't understand what was going on, I googled hallucinations in the elderly, as I simultaneously packed my suitcase to head home. Long story short, during an inpatient hospital evaluation, she was diagnosed with Lewy Body Dementia.

Since the "diagnosis", I've had caregivers check on her to ensure she was taking her meds etc., and would discuss the possibility with my mom of her moving near me into a senior development. She would come and stay with me a few weeks at a time, but it was very stressful. After 2 years, thousands of dollars in payments to aides, another stint in the hospital, me running back and forth home periodically, I finally put my foot down and told her we were selling her co-op and that she was moving into a senior "development" near me. I did not refer to it as an assisted living facility. By this time, she stopped resisting the move and was actually afraid to be alone.

She's been in an AL facility for three weeks now. The first night, my adult son and I brought her a new flat screen TV, and a few other personal items to make her feel as comfortable as possible. As we were preparing to leave, my mother broke down into tears!!! I have NEVER seen my mother cry before - EVER! I was so torn and guilt-ridden and didn't know what to do. We had the nurse to come in to calm her down, and we left. Two days later, she said she liked it better. She said that she thought we were putting her away somewhere where the "unwanted" go. At least twice a week since then, I've received calls from various nursing staff indicating that my mom said she wanted to go home, and could I speak to her and try to calm her down. One day, she even pulled her clothing out of the closet and started packing.

We are all still getting adjusted to the change...
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NYC2015 I am in the same boat. My mom has slight dementia and we put her in an ALF about 2 months ago. She has not adusted at al. When she was home se called the pharmacist 3x a day and asked him about her pills and was confused. She wasn't able to get herself out of her chair sometimes and she wasn't eating right. It was a nightmare. She refused help in the home and meals on wheels. Well one day (mach 3 of this year) she called 911 and I took tht as a sign to not allow her to come back home. The ALF was great (we live in upper Westchester)and had a room ready in 3 hours. We brought her there and she was like an angry bear-yelling, threatening, cursing(she never cursed) but they told me she would adjust. I have the support of my family but it's just me and my husband who are in the area, my sister is in Ca. So it's ben 8 weeks and she still hates it. She says no one talks to her and she is very lonely and wants to see her cat. that breaks my heart because I have cats too. But they don't allow animals. I have a sinking feeling all the time and dread going to see her. But I go. and she continues to verbally abuse me They have her on Ativan but it makes her angry and dopey. What to do??? She may never adjust. I just have to figure out how to cope.
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Can you talk to your Mom adult to adult. Tell her what you told us, that it is breaking your heart, that the stress is killing you, that there are no good options. Sometimes seniors get so wrapped up in their lives, they stop seeing the other side of the argument. Your Mother would never knowingly want to cause you such distress. Sometimes they need reminders they are still part of the community, and the rules apply to them.
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I have tried. I told her that this is killing me but she has a personality that borders on narcissistic. Right now she can't think or care about anyone but herself and she feels I have betrayed her. I know she loves me but she thinks there is a simple solution and if she goes home she will be fine and all will be "forgiven" she has always had a kind of power over me and now she is seeing the role reversal and hates it. She's even said "how dare I" do something like this to her. In her head she's made up a a convoluted story about how she was on the way to Florida, came to say good bye and I stuck her in this place! She also thinks I un the place. Ansd she says she has no friends because of me. They know I am her daughter so no one will talk to her because they are afraid. It's all very sad. My mom and I were always best friends. But she fell down he stairs during hurricane Sandy and tore a hip muscle. She could no longer drive and she became bitter. So when I visited it was like she was jealous that I had a life and she didn't. My dad died of AD in 2010 and she obsessed about that too (although they didn't get along for years) In her mind she has her little stories about the way things are and she has stepped outside the boundary of "normal" thought. I feel so bad but I know she is safe there and it's where she needs to be. But my heart hurts for her because I love her and I can't do anything to fix" this.
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There should be an edit button.She thinks I work there and am in charge!
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debbiebasile, I truly empathize with you. My mom confuses things/places/situations all of the time, and has always been very self-centered and somewhat narcissistic. I have decided to reduce my visits to three times a week, because of the unfortunate dread I feel going to see her at the ALF (because of the mental and emotional abuse from her) and to also try and give her a chance to get adjusted.

We have work on not feeling much guilty over placing our parents in a facility, because ultimately it's the best situation for them. I've also learned that venting helps a lot! ;-)

Your mom's physicians may also have to experiment with different drugs to find the best combination for her. My mom has been on Seroquel and the Excelon patch since her diagnosis, the strength of the prescriptions have varied, however.
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thanksNYC2015. I wish there was a support group around, but maybe there is. I haven't really searched that hard. We had mom on Seroquel and she was like a zombie, but I think the dosage was wrong. A nurse I know said wellbutrin an and antidepressant may work. She needs a psych eval.
I dread going there too, I know what I'm in for. She will probably never adjust. She was very spoiled her whole life and got whatever she wanted. She was a bossy person and still is, except now I'm calling the shpts. But I still hate to be in charge of her. It is very uncomfortable for me. She just has to try to "make friends" and hopefully things will get better. But she is very awkward socially and now it is worse. Oh well, it certainly does help to vent. Stay in touch! and pray!!
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debbiebasile, yes our moms sound so much alike. My mom complained about leaving her friends in NY. However, she rarely saw any of them anymore and I told her that she can still speak with them on the phone. My mom will not leave her room, except to have lunch and dinner, or if she's having a delusional episode. But, yet she complains about being bored. (sigh) I wish my mom would make at least one friend also. But, I can see that being a challenge for her because of her smart mouth! ;-) Hang in there!
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Wow they sound very similar. My mom is bored too but won't join in the activities. Too bad they can't meet. LOL. Well you hang in there too. This too shall pass. We have to realize we are good daughters and this is the path they are walking now...
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Change is very hard for older people, especially when they have dementia. They are used to routine (even if it is a bad routine) and it feels comfortable to them. The change to the AL is scary for her, and she will need to get used to it, get into a routine, start to feel familiar with people, etc. Try visiting less because you and your brother represent the familiar and she will always turn to that if she can. Our mother has been in AL for 4 months and the first couple were traumatic for her. She still calls and complains to us, yet we are told she has made friends and is doing well when we are not there. Now she has her own life - and wow does she put up a fuss if we come for lunch and she can't sit at the table with her "friends". In AL, they assign tablemates based on their mental status etc, so they are comfortable with each other. Give it some time, visit a little less. She will come around. And remember she will tell you a very different story than the AL will. My mother is the master manipulator. We will never know the truth because she is a whining complainer to us, and pollyanna to the AL staff.
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debbie, I hear you! Maybe that is part of the aging and dementia - narcissism! Its all about them. My mom is bored too. She has NEVER had any interests except family, no hobbies, no reading, won't do puzzle, is socially inept and even in IL, which had lots of trips and activities, she didn't join in. She is bored with her own company and she is boring, has nothing to talk about because she does nothing, not interested in anything. Now with dementia, its worse but we have tried everything to get her interested and involved, so has the AL. You can't change a person, all you can do is refuse to take the blame for their unhappiness when there is nothing more you can do. Yes, it makes us sad to see Mom unhappy, and Zoloft helped (a little) but the bottom line is, she HAS to be in AL for her own safety, with professionals to be there 24/7. So we visit, bring her snacks, talk to her, etc, but that is all we can do. She has been unhappy for 40 years and we must remember that we cannot change her.
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Does the ALF have a social worker you can talk to? I am going through the same thing with my mom. I get a pit in my stomach because when I see her she verbally abuses me. She WANTS OUT. PERIOD. But she can't make it on her own. I sympathize with you. I fell burnt out too.I also think of her constantly....she is always on my mind. I feel like she is tethered to me in a weird way and I don't like it....I need to cut free and not feel guilty and so do you! Hope you can get some help. Don't let guilt rule you. You saved her life.
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I have to let you know that this does get better! My mother doesn't border on narcissistic....She DEFINES it! I can tell you that I've been called every name in the book, accusations that could fill a phone book.....so much BS. She's been in ALF for nearly six months....it's better now. She tells me that she doesn't do anything but stay in her room and all the services are awful but the staff tell me she socializes, paints, exercises...is basically the belle of the ball. So, give it some time and her own human nature will have her interacting. Don't take her word either, check with the staff. Also, my mother calls and rips me up but doesn't remember doing it. She'll tell me we haven't spoken for months and it's been one day. She also demands things but unless she asks 4-5 times over two or so weeks....I just ignore the requests. She would have me running like a hamster in a wheel and then not even remember wanting that thing! It was beyond stressful! I completely ignore her requests to home or back to her town--just say "I'll work on that." She doesn't remember later on. Hang in there, you too will get through this!!
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I have the sane sad situation. My mom has been in a nursing home for over 4 yrs. She has dementia but still knows enough to be sad, cry, and ask what she is supposed to do. My mom is sweet, very, very sweet and it makes it SO hard to leave her when I visit and she doesn't want me to leave. especially when she crys. She isolates and eats all meals in her room (Im glad they allow it because she would never socialize and eat with others). There is nothing more my sister and I can do except accept that she will only get worse. It's so very hard and I wonder if sadness is the only feeling I will ever have when I think of my mom. Nothing helps except acceptance.
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This forum has realy helped me so much. I thank all of you! I was in the ER for 5 hours last night with her. She had a weird pain she never had before. I think she fell but is too afraid to tell them. So she checked out OK but it was so sad to see how much she is declining...but when the Percocet kicked in she was soooo happy. Boy it was like the good old days. I forgot how delightful she can be! and so funny! but that won't last forever...she can't take that all the time. It really was a happy pill. She didn't even mind going back to the ALF, But she called me this morning complaining and scared and HUNGRY. So I told her to pull her cord to get them and she had no idea what I was talking about. So I called the front desk and they took acre of it. I am grateful for the ALF and I know I have to leave her there-but that "forever" concept still makes me feel uneasy. So I say the same thing as others "I'm working on it"
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This article helped me greatly; wish I had it before mom died three years ago. Please take time to read it. https://oca.org/parish-ministry/senior/personhood-and-an-aging-mind-and-body
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https://oca.org/parish-ministry/senior/personhood-and-an-aging-mind-and-body
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https://oca.org/parish-ministry/senior/personhood-and-an-aging-mind-and-body
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thanks you for the article. It was magnificent and helped me see things in a new light-a true blessing.
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