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

Question

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

Follow

Share

Hello. My mom has Parkinson's and Dementia, and late last year we decided to move her into an ALF memory care facility. She had been doing very well and was quite content until she fell two months ago. She broke her pelvis in two places, and after hospital and rehab, was finally able to come back to her ALF (she was gone a month). It's now been two months since the fall, and she's declined rapidly mentally. She is speaking in complete jumbles and I can't even make out what she is asking for or talking about. She has become aggressive and frustrated and incredibly anxious, which are all things she never really did before the fall. I've talked in depth with the staff at the ALF and they believe it's partly because her dementia is progressing, and partly because she now cannot walk without assistance or supervision and is frustrated by this since she was incredibly active before the fall. I can accept all of this... but my visits with her are just miserable now. Just today I went to visit, and when I came in they had her at the nurses' station and were trying to calm her down. Apparently she was trying to get up out of her wheelchair and walk on her own, then started screaming at the nurses and aides when they asked her to sit down. They were relieved I came because they thought I could console her. Well, I couldn't. She was just as grouchy with me as she was with them. I must have asked her to stay in her wheelchair two dozen times. She says, "I am." She says it while she is standing! I got her up multiple times and helped her walk with the walker... problem is she didn't want to leave her room, so we walked in circles. I was becoming increasingly impatient, but I kept my cool. By the time I left after two hours I was the grouchy one! I had to pry her fingers off of the ledge outside of her room to get her back to the nurses' station since she can't be left alone, and I left the place miserable. God Bless those nurses and aides.

I am not even sure what my question is really. I think I just wanted to vent. I almost feel like I don't want to visit (I usually go twice a week for three hours each visit), and I know some people visit more, some less, depending on their situation. I'm feeling I'm not handling this rapid decline very well. My mom doesn't remember I came, and is angry with me while I am there, and I can't even carry on a conversation with her, but I feel guilty if I don't see her.

61 Answers

Most
Helpful Newest
First Oldest
First

1 2 3

Several questions:
1 - how old are your mom & you?
2 - how far of a drive to visit her?
3 - did she have an anestetic when she fell?

I ask these because my mom is now 4 minutes from me not 40 - I find I have changed my visitation pattern - mom isn't always talking clearly either & I can't imagine a 3 hour visit so good on you - but I do take her to medical appointments that lasts longer but there is a focus to those - I try to end it with a treat like an ice cream cone

I also bring her something every time I go - some she likes better than others - often a specialty coffee & a cookie/ hair barette/ return a sweater that you fixed for her - this usually starts the visit on a pleasant tone & deep down she knows that you were thinking about her - I have even taken something home to bring back 'repaired' when I was stuck for ideas - one of mom's favourite is 1/2 decaf coffee & 1/2 hot chocolate

If you are closer shorten you visit time - I have gone over & she was asleep so I just had a quick talk to staff about her & left - it was less than 15 minutes over/talk/back but I know it is easy to get there the next day - when she was farther I never was less than an hour to justify the driving time

An anestetic can impare the brain health especially those with dementia, either long or short term - if she had one then that basically can boost the dementia into a deeper level ...... kind of accelerates it a bit

I asked your age - as the older we get then more we start to have needs that being a caregiver [either at home or in a NH] means that they are not fully fulfilled -

I try to change up visiting times so I'm not on a schedule & staff never know when I'll show up so she is always well taken care of [I made sure that they know how close I am]

Helpful Answer (5)

Report

Great idea with the changing times of visits. I would visit Sunday evening when my mom had just gotten into bed. I would also make short visits RANDOMLY during the week. I wanted to walk in and see what was going on there at different times. You really find out things that way. It's important that the staff knows someone is checking on a particular resident.

(3)

Report

I want you to listen to me. If you are feeling guilty for not visiting her now, imagine having to live with the guilt if you didn't visit and something happened and you could no longer visit !! I spent so many days visiting my mom where she was so grouchy and hard to deal with, but now wish I could go visit her every single day. For me, when my mom reached the end of her life, I spent 5 nights sleeping in a chair beside her bed and was there with her when she passed and I am so thankful I put aside my own frustration and did everything I could for my mom because now I have a sense of peace knowing I was there for her until the very end and wouldn't change one thing I did!

Helpful Answer (4)

Report

My advice to you would be to visit. If you have to make yourself do it then so be it. She may not remember, but you will. If you don't, you will punish yourself later. Shorter visits would definitely help.

Helpful Answer (2)

Report

After my mom’s hip surgery, very similar behaviors. I’ve since learned about anesthesia and dementia causing odd behaviors and decline. I found the only thing that helped a little was to take her out to the middle of the parking lot and let her just sit a bit. In our case, those behaviors went away after a couple months. I’m hoping for you as well.

Helpful Answer (3)

Report

I guess it was easier for me since it was my mother in law ???

Her husband and her son did not visit her but i did once a week. I tried twice once but she didnt recognize me the second time tho she did all other times.

She didnt recognize me as daugh-in-law just someone familiar.

We'd walk in hall about 20 mins and id chatter and then she'd begin to fade so id leave. But I felt that at least for a short time she'd have an old familiar face and felt loved.

Helpful Answer (6)

Report

jclscc…..would you consider hiring in, a caregiver? The facility can only do so much but what about companionship an hour or 2 a day. There are many outside agencies that provide kind women (like myself) to encourage, walk with, talk with the elderly. It's not cheap but perhaps, your Mom has LTC insurance that would cover it? Just a thought. Tina

Helpful Answer (2)

Report

shakingdustoff, I'm curious. What did the infectious disease doctor do or find out about your mom?

Helpful Answer (2)

Report

I have the same issue as you, but yours is worse. I see a therapist for my own anxiety and guilt - consider that or join a support group, get a geriatric psychiatrist to see about medication for your mother's anxiety, also DO CHECK FOR UTI! btw - it is very typical for dementia patients to show extreme signs of decline and mental disturbances after being in the hospital. Please do not feel guilty about needed to visit less and certainly do not feel guilty about whatever church she goes to. You are doing your very best to help and at the same time, cling on to your own sanity. It is horrible to watch and to be the object of their feelings. (If it helps, try to think that you are a bit of a lightning rod for her feelings, but you are NOT THE CAUSE!) Hang in there.

Helpful Answer (8)

Report

I would definitely limit your visit time just for your mental health.
My dad had dementia and just got quieter and non verbal. Slept a lot. I just had to sit and look around the room.
I would bring him the occasional treat they cant get in there, holiday items for his shelf above the bed, and cards. Things always went missing eventually. All from the dollar store. Brought him magazines with lots of pics until he lost interest. Ended up talking to the roommate and nursing staff.
When I read you stay 3 hours at a time, I thought wow I couldn't do that.
You are doing the best for your mom so don't feel bad. Your going to start having physical illnesses from overdoing it. Stop feeling guilty. That will bring on more physical ailments.

Helpful Answer (8)

Report

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.

Helpful Answer (11)

Report

Fisherman, your advice is SO very helpful. I am dealing with a similar situation and have not figured out a practical way to achieve my goals (make sure Mom is safe and relatively happy, have few regrets about the frequency of my visits), and stay relatively sane during the process. I have just "screenshot" your post, so I can refer to it often. It is short, sweet, and in line with my objectives. Thank you!

Helpful Answer (7)

Report

Three hours at a time for a visit is too long, considering her situation. Yes, absolutely have her tested for a UTI. My mom had some very interesting, delusional ideas when she had a UTI. Omigosh. Also, do not under any circumstances feel guilty if you do not visit as often (Catholic guilt? Been there, I no longer accept that!). Love your Mom, always be as sweet to her as you can muster. Sounds like you are doing that very well. Ignore the well-meaning advice to take her home. That will just make it worse and she won't want to return to the ALF. This is tough and my heart truly goes out to you. Remember the Mom you love, who brought you up and cared for you. You will not regret doing the best you can for her, trust me, but take care of yourself too!

Helpful Answer (9)

Report

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.

Helpful Answer (13)

Report

For years I dreaded visiting Mom, never knowing what I would find. When she was still at home it was “is she still alive?” (Because she was alone thru the night). At the ALF, it was “who will she be today?”. At the NH, it was “will she be awake?”. Mind you, I wish Mom was 15 minutes away instead of the 1.5 hour-drive. Then maybe I would have visited her more than once a week.

Towards the end I limited my visits to 1 hour max (sometimes they were only 15 minutes, other times she was sound asleep), using the long drive to prepare myself & then unwind (because of Mom’s anxiousness, etc.). At first I felt bad for the short visits, but I got over that. Sometimes the visits just consisted of us looking out the window, not saying a word, maybe holding hands, just finding comfort in each other’s presence. I had to be ok with that because it was what she needed.

Mom has been gone a little over 6 months, and I am glad I was able to make those visits. But dread them I did.

Helpful Answer (9)

Report

It's possible if your Mom sees herself in you at all, then maybe she is jealous and envious of your youth compared to her, your health compared to hers, etc. I feel like my mom is that way with me. I am younger, I have more hair, etc. I represent to her what she used to be like. Not sure if this helps... it is just an observation.

Helpful Answer (5)

Report

My mother was like this. I used to give her a mini manicure every week or so. She would be still very still while I did this. I guessed it was engrained in a woman's brain to be still while your nails dry. I used fast drying clear polish. I also read to her. Bible, short stories and poems. You can do a search for "things to do with an Alzheimer's patient" online. You'll get lots of suggestions. Hang in there, it is normal for you to feel this way.

Helpful Answer (5)

Report

The Federal Government and Medicare and Medicaid REQUIRE that "only those medications required to treat the resident’s assessed condition are being used, it is important to ASSESS THE NEED TO REDUCE these medications [Especially Antidepressants, Hypnotics, Anticoagulant (e.g., warfarin, heparin, or low- molecular weight heparin), Antibiotics, Diuretics and Opioids] wherever possible and ensure that the medication is the most effective for the resident’s assessed condition." This is why doctors and hospitals and nursing homes attempt to decrease certain medications that your loved ones are taking...because they have to or risk losing funding from Medicare and/or Medicaid. Not fun to do but it is required.

Same thing with falls. According to Medicare and/or Medicaid, a patient or resident has the "RIGHT to fall" so NO side rails, or restraints of any type or anything that prevents a person from getting out of bed or out of a chair by themselves can be used at a hospital or nursing home. Again, if the hospital or nursing home is "caught" using "restraints", then they are at risk of losing funding from Medicare and/or Medicaid.

Helpful Answer (1)

Report

Sounds like you really love your mom and her well being is most important to you. It’s never easy to see a parent decline so rapidly. I understand cause I’ve lived much of the same. My advise is to ask yourself could you live with not going to visit her because it is challenging? Life gives us so many turns and some are painfully not easy. Continue to love on her but most of all do what you feel is best for you.

Helpful Answer (3)

Report

Hi,
My mom has Alzheimer’s and has been in a SNF for four years. She was diagnosed 12 years ago. She has been on meds for behavior for 5 years and it has been a blessing. Doctors wanted to take her off against my wishes and they regretted it! She is now back on it. She says Little has not walked in three years and it is truly heartbreaking! But, she is my mom and she cared for me and raised me for 18 years. I love her enough to give back. I go for an hour each evening and feed her dinner and brush her teeth. By that time she is ready to sleep. 😌
This disease is incredibly difficult and heart wrenching but, I agree, you may regret not being there later. Find your comfort zone when you feel most comfortable and keep your visit short. I play little short videos of some of her old favorites on YouTube. Perry Como and Frank Sinatra. I love Lucy episodes like when Lucy and Ethel work in the candy factory. That makes her laugh and lasts two minutes. God Bless and good luck.

Helpful Answer (8)

Report

Take her home and see that she hate where she is. There must be something wrong that may caused her falling. Either no one responded to her call and she attempted to do things for herself and she fall. Her reactions cannot be attributed for the progress of dementia. She felt abandoned and no one paid her attention. So take her home in weekend if you can and see and observe changes in her reactions. Elder missed their home and their environment. It help them to recover.

Helpful Answer (1)

Report

You need to continue to visit, but make the visits short. Perhaps take a small gift or treat with you. Put on a cheerful face, say "Hello Mom. I've brought you your favorite ice cream." Kiss her cheek and say goodbye. My husband had LBD with parkinson's. He could not handle long visits. You will feel better when she passes. Do you have her on Hospice yet?

Helpful Answer (4)

Report

Very helpful and sympathetic ideas for you from Fisherman, I thought.

Just some suggestions to try:

What caused the full, do you know?
Any useful information in her notes from rehab? What kind of PT was she doing there? - because it was clearly successful, and maybe something like it could be carried on to relieve her sense of confinement.
How is any continuing pain being managed?
Has anyone had a look at her bottom to check for pressure sores?

Helpful Answer (5)

Report

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.

Helpful Answer (13)

Report

Sometimes we need to vent! We would be normal we didn’t with this terrible illness!! Visit your mom and I know this difficult m, but try to remember she can’t help it! I went through Alzheimer’s with dad, Vascular and Lewy Bodies with mom. Now Vascular a d Frontal temporal Lobe with my husband! Hang in there and you always vent! If you want I will give you my email and you can write!! Prayers

Helpful Answer (10)

Report

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

Helpful Answer (40)

Report

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.

Helpful Answer (14)

Report

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.

Helpful Answer (15)

Report

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.

Helpful Answer (25)

Report

My mom is in SNF and I visit every other week. I know she’s very well taken care of. When I go to visit I usually go at lunch time or after lunch. I always feel I’m interrupting her routine, she tells me I can go. We don’t have anything to talk about either. It’s hard to see them this way. She was a big Jeporady and Wheel of Fortune fan for decades ..she can’t follow it anymore..so when I visit I use the time to chat with other Residents and families..

Helpful Answer (9)

Report

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.

Helpful Answer (21)

Report

1 2 3

This question has been closed for answers. Ask a New Question.

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

61 Answers

Recent Questions

Popular Questions

Related Questions