Mom is declining rapidly at ALF and I'm finding I don't want to visit. Any advice?

My advice now based on a fair amount of experience (my wife died last month after several months in a care facility:

1. Go as often as you can you will regret it deeply if you don't.
2. Stay shorter periods. I found about 10 - 30 minutes overall was about optimum over the long haul.
3. Find a way to exit gracefully each time. I found planning to leave just before her meal time worked out best .... gave her something to occupy her mind and look forward to.
4. While there don't ask questions, speak softly, offer compliments and encouragement.

.....just a few things I learned.

Fisherman

Jclscc, has your mom been tested for a UTI? Those are exactly the symptoms my mom exhibits when she has one. Like right now. Anxious, grouchy, worrying about stuff, hallucinating, busy. She fell from her bed last night and cut her leg, looking for her cat. (Cat’s at my house) Have them rule that out with a urine test. Then you need to research her meds. There may be an interaction between them that could be causing this and should be reviewed with her doctor. I agree it’s very distressing to watch when their behaviors are frightening or upsetting. I didn’t get much sleep last night and had to resort to pepto bismol to settle my stomach. I go every day and I busy myself trying to research the potential causes, which usually make me feel like I’m doing something. I’m my case it’s usually UTI and antibiotics get her straightened out in a few days.

I'm having problems visiting my Mom also.

She was alert, oriented, able to do her own ADLs as of April 22, 2017 and on April 23, 2017 she asked to go to the ER Dept. and it has been down hill ever since. Mom has Major Depression with Delusions and Mild Dementia and is now living in a Memory Care Unit using a wheelchair and needs assistance with all ADLs.

I am still mad at Mom (and a certain staff member) because Mom changed her POA while she was delusional and that staff member couldn't "see" anything wrong with Mom. I had to petition for guardianship and after several meetings with various lawyers, Mom's Attorney Ad Lidem decided that Mom did NOT know what she was doing when she changed her POA in August 2017 so Mom's POA reverted back to me.

I sometimes have panic attacks when I think of visiting Mom and, on occasion, I have made it all the way to the car before I had a panic attack. I am seeing a counselor who told me that I am grieving the loss of the Mother I once knew just like I would have grieved if Mom had died because something in Mom is dying--her personality.

You stated that you "usually go twice a week for three hours each visit" and that you "feel guilty if I don't see her". Because your Mom's behavior has changed so drastically and she has become aggressive and frustrated and incredibly anxious, I think that you need to visit your Mom less often--maybe 2 days a week for 1 or 1 1/2 hours per visit or maybe just once a week.

We all feel guilty that we don't visit our parents as often as we think we should. Remember that we are here for you to vent to and to support you. God Bless.

When my mom was in her facility, starting out on the floor and then moving to the Alzheimer’s unit, I found visits difficult as well. She was so delusional and would become angry if I ever dared to contradict her. I visited twice a week or so, but seldom stayed more than an hour. There was nothing to talk about. She didn’t want to watch television or leave her room. I’d suggest you shorten your visits, too. She should probably be seen by the facility’s doctor to see if there are any meds that would help her.

Thank you everyone for answering! I wasn't even sure if my question had posted, so when I saw I had replies I was overjoyed. I really appreciate all of you for taking the time out of your day to offer me some advice and comfort.

I had been working on her meds, because they had her on SO many extra meds at the rehab facility that at first the doctor (she has the house doctor, thank God!) and I thought it was the meds. But she's been off of them for a month and is still exceptionally confused. I definitely considered a UTI as well- she's had four of them this year alone. I will bring it up when I go Wednesday.

Also, I think I will have to visit less. I was considering visiting just one day a week, on a different day. Sundays by far are the worst day for me to visit, but I had been going then because the activities' director is not there on Sundays and they have church services in the dining/rec room. My mom HATES the church services, which is kind of funny considering we went to church when I was a kid, and she has always been a devout Catholic. They have the most wonderful music, and she just says she wants to hide in her room. So I usually hide in her room with her, haha! But the last few times have been miserable as I've mentioned. I can't even push her past the rec room to get to the little cafe on the assisted side because she wants to go nowhere near the service. But I think this is just something the staff is going to have to figure out.

I appreciate all of you. Thank you so much for replying.

jclscc,
I can sympathize. My 95 yr old mother is in stage 6 Alzheimer's in a Memory Care facility. Hubs and I have been through the ringer (I think stage 5 was the worst). Mom's on a bunch of meds so she remains calm during the day (she was hitting and fighting the staff) and also for sleep at night (or she keeps the whole place (28 residents) awake). I hate that she needs to be "chemically restrained" but she can't be screaming her head off and slapping and gouging people.

It truly hurts my heart to watch her decline. We (hubby and I) visit once a week for about half an hour. Like everyone else, there's nothing to talk about. (I even asked the posters here what to say!) She can't remember ANY part of her life, so memories are nonexistent. She is a "non-entity". There is no personality left. She is just "existing" in a void. I just talk about my week, then leave.

I think three hours is too long of a visit for both of you. Shorten it drastically one week and see if you and she feel better. Whatever you do, DON'T be motivated by guilt. It only makes you feel worse. You are doing the best you can. I try not to think what the staff thinks of me only going once a week but I can't get wrapped up in that.

Lisa,
I'm in the same boat. Isn't it sad that they have ceased to exist as the people they once were? Where did my mother go? It's like the personality died but the body is still hanging around. :(

DeeAnna,
I had a point in my life where I would get very worked up before I saw my Mom, then very depressed afterward. Way too many negative emotions were happening that I couldn't control. At that time, I asked the doctor for an anti anxiety medication so I could see my mom and not freak out. It helped for the period of time I needed it. Things are "better" now and I don't have to take it before I see her anymore. This is just my experience, I'm not recommending medication for you. It's good to have a counselor-I have one too.

jclscc,
I was just thinking WHY your mom might have such an aversion to the church services. When I was growing up in the Catholic Church, I remember the teaching at the time -- it was a SIN to go into ANY OTHER CHURCH, especially participating in the services. You would be breaking Catholic laws and God was going to punish you. (Really!) Maybe that's why she won't go near there (?)

God help us all.

GenealogyGeri...you have been through it. I’d like to know how you stay sane!!
Jclscc, I totally get it that you don’t want to visit. My dad was so angry at me for his move to the NH that he was very verbally abusive and accused me of all kinds of things. One day I snapped and decided I wouldn’t see him again until he settled down. I took 2 months off and it was the best 2 months of my life...I felt like a normal person again. When I went back with my sister when she was visiting, he started in on both of us. Guess what ...I got a stress induced colitis! Still dealing with that! So I do not visit but once a week and only for about an hour. I am usually putting out fires while I’m there so it’s not a real visit. I plan it right after lunch usually or right before bingo so I can take him there and leave. My visits are an obligation to him and my sisters and I do not feel guilty for protecting my mental and physical health. I’m sorry you too are going through this. Obviously many of us have. I suggest visit less and shorter times...I disagree you will regret if you don’t visit more often. Some people might but we are not all alike. I only regret that my dad can’t be kind and is causing me health issues.  Seeing a counselor is a good idea. 

My dad went to rehab after his broken pelvis and was awful while there. Went back to AL, broke his femur and is now wheelchair bound and in NH. They wouldn’t let him back in AL.

My mother is in memory care and I visit one or two times per week. I keep my visits to an hour or less and arrive before supper so that after a visit I get her to the table & leave. It works out very well and all I say is "I love you and I'll see you another day". She doesn't remember that I've been there but is always happy to see me. She doesn't know my name but recognizes me. I will bring her flowers, a couple cookies, a candy bar etc. & she loves that. We usually have the same conversations each time i.e. where I live (it takes me 10 minutes to get there), the weather, show pictures on my phone. Sometimes I get a magazine and we look at pictures or turn on the TV in her room and watch Ellen. She is always surprised when I turn on her TV as she doesn't know what it is or how to work it herself. Other times she is in the front living room with other residents and we watch TV or sing along to whatever songs are playing on the TV. I do feel guilty sometimes if I don't get to visit at least once a week but I do have a sister & two brothers who can visit also. Do Not feel guilty for not visiting as it became really hard when she couldn't remember names but know I "introduce" myself and say names when looking at pictures. She doesn't remember her husbands name-just that he died. Their wedding photo she usually drapes a Kleenex over him so the "staff" knows that he isn't there. She doesn't speak in formed thoughts but I can read her cues enough to know what she is talking about. Also mom loves when I shave her wiskers (Flawless shavers are awesome) and trim her nails for her.
So to anyone who wants to vent, this is the forum as we are all experiencing similar living trials and tribulations. God bless staff and caregivers who work with dementia/Alzheimer residents.

Funny how we all seem to be going through some version of the same thing. My mother fell a week and a half ago at her alf and broke two fingers. Doctors performed surgery this past Friday. She cannot standup or walk right now. Yet, she insists she can do all those things.

She's angry at me and my wife for hiring a sitter, saying she doesn't need a sitter. She tells us she's going back home where her friends really care about her. She won't let any of the nurses help her, she turns them down when they offer to help, then complains when they don't. She gets furious anytime me or my wife contradict her delusional thinking.

I visited her the day before she fell and she seemed fine, as fine as she ever is these days. Then the next day everything changed.

I don't have an answer to your situation; only that it seems so common.

Hello my friends!

I was so blown away when I saw how many people had responded to this. I had tears running down my face as I read these responses. I read each and every one and took something from all of them. I just couldn't believe so many people had taken the time out of their busy and stressful lives to answer my post. Thank all of you. You are all incredible people, and I wish you the best in your journeys with your families.

I was so overwhelmed in the amount of posts and questions that I would have to write a novel to answer them all! But I appreciate all of your interest and care- oh my gosh, I can feel the love! I'll just write a short update and comment on a few of the questions that stood out.

I had a bit of a stressful week- I had a meeting with the care team, and they are suggesting that mom might be ready for a skilled nursing facility. I was expecting this might come at some point, but it was just sooner than I had expected. They said she is requiring one-on-one care constantly through the day, and of course it is more than an ALF, even memory care, can provide. The doctor visited mom yesterday and is fiddling with her meds a little bit. Meds have come up a lot in the posts- my mom had been on a lot of meds in rehab, but has been off of them now and is all bare minimums, what she was on before she broke her pelvis- Sinemet (Parkinson's med for tremors), Metoprolol (for heart), and Aricept (for the noggin). Those are the only scripts she takes. The rest are just multivitamins. The doctor is going to try buspirone before they decide on the move. Her behavior is bad enough that the care team suggested a sitter or that I come for long daily visits (!) because the staff just can't handle her. I spoke with them about my personal health issues (which I didn't get into much on here, but as some of you had mentioned or warned me about my health- I do have several health issues going on at once. My health has gone in the crapper these past few months). I told her staying all day I just couldn't do. I know they are not staffed for one-on-one care but we'd have to find alternatives. Thankfully she has the most amazing care team and we are working together to find a solution. At least my mom doesn't hit (that I know of). Just up, down, up, down, sweater on, sweater off, up, down... you get the idea. That has been the trouble in her visits too, like yesterday I was pushing her in the wheelchair and we were just going in circles! I tried to take her to her room and she said "No, let's turn around!" So we did, didn't get five feet, and she said, "Let's turn around!" She digs her feet into the ground if I don't comply! Oh boy I relate to the posts about them being like kids. Little naughty kids!

I also related to the posts about the manicures and hair care- I actually bring a little pink tote with me, every time I come, with nail polish, files, and personal care stuff in it! I used to do her nails a lot more, paint them, fix her hair and braid it... but now she can't sit still long enough for me to finish. She really is fond of the little cafe in the ALF- you've given me an idea to take her there and try to do her nails. Maybe if I give her one of those free muffins and coffee she can't say "I want to get moving!"

A few people asked what happened with the fall- it's kind of a funny story in a way so I'll share. She was SUPER active before the fall. She danced when they had musicians, she'd walk the halls, even help the aides make beds and fold clothes. She was a real joy for the staff. Well, they were having activities, and playing noodle ball (a balloon flying through the air while the residents try to swat at it with pool noodles- seated). My mom was not participating in activities and was wandering by the couch area and the balloon went flying over the couch, so my mom tried to run and swat it. She stumbled and hit the entertainment unit, then fell on the ground. So the staff was not ignoring her and it was an accident- just that, an accident. I don't blame the staff or my mom. It just happens. It had a funny element to it though at the start, because when I got to the ER the way my mom told the story was that she "jumped through the air to hit the volleyball-" her words! So as we had to answer repeatedly what happened, it was "mom was playing a game of extreme volleyball at her memory care facility." Now of course it's not funny at all. We thought she'd recover fully, and I could have never imagined this would unfold this way. This is our journey though. And as I've read in your comments, I'm certainly not alone. One day they are fine, the next they are not.

Instead of going one day a week to visit, I think I will continue with two days a week for now but for shorter times. I do not live very close to the facility. I live 35 minutes away from the facility (I live in the country so there are no other facilities nearby, and hubby and I had planned to move out that way since he works in that direction anyway). I will adjust the time as I see how this new medicine works or if she is moved to a skilled nursing facility. It's just one day at a time now, and I will do what I can handle, physically or mentally.

Thank you everyone. We really are all in this together. What a terrible disease that robs of us our loved ones. They were all beautiful people and this is all so hard to process and cope with. I am truly grateful to all of you for responding and sharing your personal stories. Bless all of you.