Time for MC?

RDs Son

Hello all,

TLDR: Mom is in the later middle stage of Alzheimers. Care is becoming difficult, is MC the right thing to do or are there better options?

We have just signed a lease for our mom at a local memory care facility but I'm having so much doubt and guilt I'm getting even less sleep than usual and if I think about it too much I get really emotional about it. I'm hoping others can relate their decision process and timing in moving their LO into MC.

Background, my mom is currently 81 and has had noticeable memory issues since about 2013. She was living in her own house until 2019, which we then moved her into my home because she was getting lost driving around and having difficulty with day to day activities. Since then, she has been alternating between my house and my brother's house. Luckily, I semi-retired about a year and a half ago and have been at home to take care of her and watch over her. Similarly, my brother works from home and is also able to be there for her most of the time.

Up until about 4 - 6 months ago, it has been relatively easy to care for her. She was able to do all the things for herself and even help our around the house a bit, mostly light cleaning. About six months ago, she wandered away from my brother's house a couple of times but luckily neighbors saw her and alerted my brother. She lives in a separate apartment over their garage and is more isolated at my brother's house. I believe her wandering was due to anxiety at being alone and then looking for someone, before getting lost and not knowing where she was. 

When she is with me she lives in my house and hasn't tried to wander off, though I don't want to leave her alone for any extended period now. She also smokes (outside) but many times puts her cig butts out (again outside) and then throws them in our trash inside the house. This has me worried she will forget the sequence of steps with her smoking and cause a fire in the house while I'm out shopping or running errands. I try to tell her to keep all the smoking outside but it's useless as she forgets about it as soon as I tell her.

Her memory has degraded quite a bit over the last few months as well, both short term and long term. She has a hard time remembering who her children are and thinks they are still kids who need her care. Most of her past life she can't remember - what jobs she's had, where she's lived, her ex-husband (my dad), etc. etc. She doesn't know what day it is, the year, or what she has done just 5 minutes ago. Her only activities with me are watching tv, reading magazines, smoking, and talking to me. We play some games from time to time but her ability to do this is getting worse. She likes card games, but I have to coach her through even the most simple of card games. 

Still, she is in good physical health and is independent with her bodily functions, can take a shower as long as I get it ready for her, and can dress herself. 

My main concern is her anxiety. She is my shadow now and is very uncomfortable if left alone for an extended period of time. When she wakes up in the morning she finds me and wakes me up, coming into my room every 3 minutes to check if I'm still here. This is usually around 5 in the morning and I feel like I no longer can set my own schedule. This continues throughout the day and I sit with her in the evenings until she falls asleep. We went to the doctor a few days ago and they prescribed her Trazedone to help her sleep at night. Hopefully the prescription will come in today and she can start taking that. 

I feel like she doesn't have any real activities right now outside of smoking, watching tv, and waiting for me to entertain her. To complicate things, I want to return to work in a few months and really don't know how I can manage that with her living at my house. Talking with my brother we both agreed that living in his apartment really isn't an option anymore, so it is on me if she doesn't go to a memory care unit.  

So if we put her in the memory care unit, they don't allow smoking so she will go through withdrawals while at the same time being in a completely new environment with a bunch of people she doesn't know. Her fear of being alone while living in a MC apartment also has me worried. The MC facility looks really nice, but the last time we toured through there I couldnt' help but get the feeling we were putting her in an asylum, like One Flew over the Cuckoos Nest. When we left the MC unit, there was an elderly gentleman standing next to the exterior locked door and as soon as we left he started banging on the door to be let out. Very sad. I'm also worried about her being harrassed by the other patients, which I know will probably happen. It will be up to the staff to make sure it doesn't get out of hand. They do have a lot of activities and her brain will be much more excercised than what I can provide for her at my house, but I feel like she's going to a place to die.

Needless to say, I'm wracked with guilt and am having a tough time coping with this. I'm pretty sure when we drop her off I'll be crying because I'm a pretty emotional person and can't help myself. 

Have you dealt with this before and at what point did you decide a MC unit was best for you LO? Have you worked and had your LO cared for by others while you were away and how did you do it? I know that is a burden, especially due to lack of sleep and the stress while working a full time job. Any options? Luckily, the MC unit is a month to month lease, so if things go really bad we can always pull her out and reassess.

Thanks to all for reading and providing your thoughts, I really appreciate it, and best of luck in your situations.

SusanB-dil

Hi RD's son - welcome to 'here'...  

It already sounds like she should not be left alone at all.  If you and brother are no longer able to assist her as needed, there is nothing wrong with finding the right MC.  Perhaps the one you visited is not a good fit.  I don't know anything about a facility's smoking procedures, but I think I saw a post where they are allowed to go outside to do so, in an enclosed or fenced common area.  For some help for you - some folks use adult daycare, and some utilize in-home care at least part of the time, as that can get pricey.  You can also call the alz care-support line, and do check the 'solutions' tab above the forums.  No guilts on finding a place.  A lot of us would like to be able to keep a LO at home, but it can get to the point where it is just not practical.  You would be placing your mom to help - doing it for her, not to her, but do check into other facilities.

MN Chickadee

Hi and welcome. The point where MC is needed or appropriate differs for all of us. For my family it was when my mother started with incontinence, which is pretty inevitable for Alzheimers. Usually incontinence, wandering, and/or night waking is what really does the caregivers in. It became exhausting. It also started rather suddenly. A couple accidents here and there over 2 months and then all of a sudden incontinent. 

As for your concerns, a couple thoughts. One is that adult daycare was a wonderful stop gap for when my mom wasn't quite ready for moving to memory care. They have all the dementia specific activities that a MC would have but it's just during the day. She started a couple days a week and then we went to 5 days because it was so good for her. If this is an option in your area I highly recommend looking at it. The socialization for her and respite for us was perfect. Ours was able to handle mom's changing needs, such as giving meds and helping with toileting when she was becoming incontinent. 

MC units are not designed to be pleasant for us caregivers, for many reasons safety and otherwise. When you haven't spent much time in one the people wanting to leave and everything else about it can be very uncomfortable. However it is probably normal. You get used to it. I was indeed horrified at it in the beginning, but as I spent time there I came to realize the staff was very caring and everything was designed for dementia and it was all ok. I mean nothing about this horrid disease is ok but as long as people have it then it's ok to admit there is good memory care. Not all are equal, but good ones do exist. It's Groundhogs Day every day, same routine all the time so people know what to expect. Most residents thrive on that routine and structure. My mother was a ball of stress and anxiety at home, worrying about everything related to daily life. Once she settled in at MC that fell away and her anxiety dialed way down. She was very social even until the end so enjoyed being around people all the time, and there wasn't the same triggers and stressors of the house. That being said, the adjustment to both daycare and memory care were difficult. It takes time. The first weeks were hell for both situations. 

You don't mention if you have a spouse or children, but if so there has to be some consideration for them your health and well being as well. Some people want to travel and have some independence in their retirement, others are ok with being tethered home. It is a full time job and then some to care for a PWD. Taking the plunge into long term care is scary. I hope you find some answers and clarity. There is no easy answer. Is your brother looking to get out of the full time care gig? That seems like it would have a big impact. 

Edited to add - ours allowed smoking outdoors, they would take one lady out on a schedule to smoke. She was allowed like 4 a day, not sure if her family or doctor said or what. However it seemed like an ordeal. She was always asking to smoke, and if there is any way to avoid that it seems better. I don't know much about smoking cessation, I have seen people here mention the patches. If you need advice on that in particular you might start a new thread with that in the title. 

harshedbuzz

RDs Son wrote:

Hello all,

Hi and welcome. I am sorry for your need to be here, but glad you found us. 

TLDR: Mom is in the later middle stage of Alzheimers. Care is becoming difficult, is MC the right thing to do or are there better options?

It is always a matter of balancing the needs of the PWD and the rest of the family. Sometimes the amount of money available for providing care can weigh mightily on the choices we have especially given the unpredictability of time care will be needed. My dad lived less than 2 years after his (later than I would have liked) diagnosis, my younger aunt lived at least 15 years with dementia (four of them in stage 7), her older sister died some 5 years after her diagnosis after a broken hip. It is difficult to know what the better option is until it has been trialed. 

We have just signed a lease for our mom at a local memory care facility but I'm having so much doubt and guilt I'm getting even less sleep than usual and if I think about it too much I get really emotional about it. I'm hoping others can relate their decision process and timing in moving their LO into MC.

My dad's dementia was a hard road. But no part of it, for me, was worse than the weeks leading up to moving him into a MCF. My dad and I never got along, but even so, the prospect of moving him made me physically ill for weeks. It was much better once the move was made- even before he settled in.

My mother officially made the decision to move dad but it required me all but holding a gun to her head. Like you, the decision was motivated by safety. Dad's presentation included a lot of aggressive and threatening behavior which we were able to mostly dial-back for a time with validation techniques, redirection and 25mg of Seroquel b.i.d. But over time, he got stuck on an idea that he was dying and that my mother should die with him as they "have always done everything together". I'd already toured over a dozen places in anticipation of the need for placement and had him moved within a week. 

As for timing, 4 things typically drive the timing. For some people it's a safety issue in that the PWD cannot safely be left alone- either they're an elopement risk, engaging in risky behavior (smoking is one), sleep disturbances that are impacting quality of life for those who live with the PWD and incontinence (it can be really difficult for family members to take on a task so intimate).

Background, my mom is currently 81 and has had noticeable memory issues since about 2013. She was living in her own house until 2019, which we then moved her into my home because she was getting lost driving around and having difficulty with day to day activities. Since then, she has been alternating between my house and my brother's house. Luckily, I semi-retired about a year and a half ago and have been at home to take care of her and watch over her. Similarly, my brother works from home and is also able to be there for her most of the time.

Up until about 4 - 6 months ago, it has been relatively easy to care for her. She was able to do all the things for herself and even help our around the house a bit, mostly light cleaning. About six months ago, she wandered away from my brother's house a couple of times but luckily neighbors saw her and alerted my brother. She lives in a separate apartment over their garage and is more isolated at my brother's house. I believe her wandering was due to anxiety at being alone and then looking for someone, before getting lost and not knowing where she was. 

You and your brother deserve all the props for being able to give your mom the time living with you as long as it was safe and appropriate to do so. Focus on that. 

When she is with me she lives in my house and hasn't tried to wander off, though I don't want to leave her alone for any extended period now. She also smokes (outside) but many times puts her cig butts out (again outside) and then throws them in our trash inside the house. This has me worried she will forget the sequence of steps with her smoking and cause a fire in the house while I'm out shopping or running errands. I try to tell her to keep all the smoking outside but it's useless as she forgets about it as soon as I tell her.

For a time, my mom brought professional caregivers in so that she could have a little free time to shop, see her own doctors and socialize. But it was very expensive and didn't provide as much respite as she needed. Some days she just needed a nap after a rough night of dad's disordered sleep but couldn't because he "shadowed" her as your mom seems to be doing with you. On paper, this seems like a benign enough thing-- especially compared to some other dementia-behaviors-- but it is very hard in the moment. 

Her memory has degraded quite a bit over the last few months as well, both short term and long term. She has a hard time remembering who her children are and thinks they are still kids who need her care. Most of her past life she can't remember - what jobs she's had, where she's lived, her ex-husband (my dad), etc. etc. She doesn't know what day it is, the year, or what she has done just 5 minutes ago. Her only activities with me are watching tv, reading magazines, smoking, and talking to me. We play some games from time to time but her ability to do this is getting worse. She likes card games, but I have to coach her through even the most simple of card games. 

A well-chosen MCF should have activities which may engage her. Most will have error-free games, music, crafts and the like during the day. A few offer field trips. My dad was very apathetic and didn't join the activities as a rule, but they could always get him engaged in their music activities. 

Still, she is in good physical health and is independent with her bodily functions, can take a shower as long as I get it ready for her, and can dress herself. 

For now. At some point she will likely become resistant to showers and changing clothes because she will believe she's already done that. Incontinence also starts in stage 6- usually urinary at first and then total. 

My main concern is her anxiety. She is my shadow now and is very uncomfortable if left alone for an extended period of time. When she wakes up in the morning she finds me and wakes me up, coming into my room every 3 minutes to check if I'm still here. This is usually around 5 in the morning and I feel like I no longer can set my own schedule. This continues throughout the day and I sit with her in the evenings until she falls asleep. We went to the doctor a few days ago and they prescribed her Trazedone to help her sleep at night. Hopefully the prescription will come in today and she can start taking that. 

A MCF with well trained staff should be able to redirect her when she's anxious. Is her PCP prescribing meds? She might be better served by a geriatric psychiatrist and an approach to lower her anxiety levels proactively with something like an SSRI in addition to aid her falling asleep. 

I feel like she doesn't have any real activities right now outside of smoking, watching tv, and waiting for me to entertain her. To complicate things, I want to return to work in a few months and really don't know how I can manage that with her living at my house. Talking with my brother we both agreed that living in his apartment really isn't an option anymore, so it is on me if she doesn't go to a memory care unit.  

So if we put her in the memory care unit, they don't allow smoking so she will go through withdrawals while at the same time being in a completely new environment with a bunch of people she doesn't know.

I can appreciate that you have a concern about the withdrawal from smoking. I totally get it. I would guess your mom isn't the first person to come into MC who smokes. We had this issue with my older aunt who was a life-long smoker with no desire to quit. Initially she was in a AL (which was a dreadfully bad fit) which distributed cigarettes at a designated smoking break and supervised it. This did not go well. When she broke her hip, she ended up in a SNF where he doctor prescribed a nicotine patch which dulled the physical symptoms of withdrawal. 

We dealt with this sort of thing in my family too. My dad was an alcoholic and restricting access (which was worsening his cognition as he had an ARD along with Alz) was really hard, but at least his drinking wasn't going to endanger everyone in the house. We had a more similar situation to yours with my sister who developed what was likely the same kind of dementia as dad in the last months of her life as she was dying from complications of AIDS. She smoked and caught bedding on fire a couple of times before we finally put her on the patch.

Her fear of being alone while living in a MC apartment also has me worried. The MC facility looks really nice, but the last time we toured through there I couldnt' help but get the feeling we were putting her in an asylum, like One Flew over the Cuckoos Nest. When we left the MC unit, there was an elderly gentleman standing next to the exterior locked door and as soon as we left he started banging on the door to be let out. Very sad.

Yes. It is very sad. I would guess than this gentlemen is new to the facility and is still adjusting to his new home. Exit-seeking behavior does tend to pass over time. Expect your mom to have a period in which she adjusts. One thing I did that made the transition easier all around was to create a therapeutic story about the MCF being a temporary stint at a fancy rehab ordered by his doctor. This absolved me of putting him in a home and it also helped him thinking we were making sure he got the best care possible.  

Early on my dad was pretty unfiltered in his appraisals of his new neighbors. "Cockoo's Nest" came up more than once. 

I'm also worried about her being harrassed by the other patients, which I know will probably happen. It will be up to the staff to make sure it doesn't get out of hand. They do have a lot of activities and her brain will be much more excercised than what I can provide for her at my house, but I feel like she's going to a place to die.

The staff will likely encourage socialization with reliably kind residents. Dad's MCF specifically placed him at an activity with 2 of the chattier folks early on until he gravitated to a group of grumpy dudes. The socialization and activities won't "exercise her brain" as it isn't a muscle, but many PWD do perk up with a schedule of dementia-informed activities. My younger aunt certainly did. A childless widow, she moved in the mid-stages and thrived for several year. In her mind, she was living in the married students' dorm at Rutgers and all was well with the world.

Needless to say, I'm wracked with guilt and am having a tough time coping with this. I'm pretty sure when we drop her off I'll be crying because I'm a pretty emotional person and can't help myself. 

This is the hardest part. I would suggest creating a narrative that doesn't signal the permanence of the move and bringing someone with you. Perhaps your brother? Mom and I took dad and I brought her home to my house for dinner and company so she wasn't rattling about the house alone that first night. 

Have you dealt with this before and at what point did you decide a MC unit was best for you LO? Have you worked and had your LO cared for by others while you were away and how did you do it? I know that is a burden, especially due to lack of sleep and the stress while working a full time job. Any options? Luckily, the MC unit is a month to month lease, so if things go really bad we can always pull her out and reassess.

See above. If it doesn't work out, you can tweak it- a different MCF, in-home aides (assuming she can afford it, swapping houses with your brother so you get a break regularly.

We did have care in the home for a time. We used an agency which was just over $30/hr 4 years ago. One of the aides stole most of my mom's jewelry. A few were duds who didn't engage dad, so mom didn't get much of a break. We went through about 6 before finding "the one". She was quite popular and availability wasn't as much as we needed. My friend was luckier initially, she found a caregiver fluent in mom's native language who took mom for walks, baked cookies with her and played games. But as mom progressed, the caregiver asked the agency to reassign her as she preferred a client who was more with it. 

Thanks to all for reading and providing your thoughts, I really appreciate it, and best of luck in your situations.

Good luck. This is hard stuff.

May flowers

Welcome to the board. The point your mom is at now is the point we put my FIL in MC. We really struggled with the decision. In hindsight, it was the best thing ever for him at that stage. They kept him safe, and busy! He was almost never left alone in his room. They went room by room to bring everyone to meals and encourage them to join the group. They had a common area where residents could either join the activities going on at the table or just sit in the chairs and chat, nap, enjoy the fireplace. My FIL didn’t do too many of the activities but he enjoyed the company. We saw a very positive change in him - at our house he was just sitting doing nothing. He quit watching TV and just wanted to walk outside all day or sit on the sofa and sleep. I tried to accommodate that as much as I could but I could not walk with him all day. 3-4 hours was my limit. 

At the MC, he walked all the time. They had a courtyard he walked around in and they had a walking group that did laps outside the facility. He made friends even though he didn’t know their names, a group of guys he had meals with or coffee with. 

The MC went downhill after a change of staff, so that is something to keep an eye on,otherwise, we felt it was a very positive move for my FIL. 

Whyzit

Google Tam Cummings Webinars and watch the one entitled “Understanding the stages of dementia.” I think it will help you in understanding where your Mom is at and give you the confidence to make an appropriate decision. Best wishes to you.

Lindsay22

Much good insight has already been posted so I will only add one thing.  As far as my own stress and personal well-being have been on this road I think the weeks after I signed the contract with MC leading up to moving her were the worst for me.  I was SO stressed about moving her to MC and how all of that would go.  It hasn't been totally smooth (as one would expect) but I can tell you that now that she is settled in a facility I am confident with I feel MUCH better.  So all of that is just to say that it will improve for you, this is a tough transition for everyone.