Assisted living questions UPDATE

[ZipaDeeDooDah]

The first facility I put Mother into was gorgeous! It was brand new, state of the art, complete with lots of safe outdoor areas that she had access too, a small garden plot for the residents, a large room with full bath and the list goes on and on. However, when she had pneumonia, we didn't even know she was sick until they removed her via ambulance, even though both my brother and I had called that morning to check in as we do every few days. When I would call to check in, 9 times out of 10 I either got an aide who didn't speak spanish or I got the daily basics but never anything personal. "She slept from 9 to 8" "She has gained 4.2 lbs" "she was dry all night" etc. After the pneumonia episode I went on the hunt for something different.

Her current home is not new and it is not state of the art. It is old, her room is small and the bathroom facilities are at the end of the hall. Her outdoor space is very limited and it is not in the chic part of town. However, when I call for an update, they always know who I am talking about, they speak english and instead of daily basics they tell me things like "she went to the sing along today, she was smiling and knew a lot of the words" "she went on a walk with the PT aide to the park today, she knew what a bird and a pinecone were" "she sat and looked at those books you sent her" "today we are having her favorite dessert and she is excited" If I want to know about her sleeping and eating patterns I need to remember to ask. The staff is too busy keeping me informed on what made my Mother happy that day.

Don't let the "presentation" fool you. Continued thoughts and prayers for you and your family.

Did you notice a difference in you mother's reaction to each place? And if so, what do you think made the difference to her?

 

[MushyMushy]

Well, it sounds like things are moving in a direction that will be easier for everyone to handle.

That's good.

Meanwhile, are you taking care of you????

(Yes, you may roll your eyes and think "DisneyDoll is such a nag! )

No, I'm not rolling my eyes! I called a therapist on Monday and she fit me in the very next day! We talked on the phone to see if she'd be a good match for me and she's pretty familiar with the types of problems I'm going through. I've been in therapy before, but she is really structured and goal oriented compared to what I'm used to. I'm pretty excited about it.

My sister and I have made some boundaries. Neither of us are rushing to our mother's side at her demands and we've cut our visits to a couple times a week (at different times). She has someone with her every day, so it's not like we're blowing her off.

And thanks for being a NAG! I can't tell you how much I appreciate hearing from you about these issues, that it's not completely unusual.

 

[MushyMushy]

I am so happy to hear that things are falling into place for your family.

I would really hope that there is also some kind of counseling available for your mother while she is there. Is there anything of the sort there for her?

We do have a psychiatrist who will be checking her out. I've been saying for the past 10 years that my mother's depressed, but nobody listened (I'd been saying a lot of things for the past several years that are all of a sudden a surprise to everyone else now ). The AL place started suggesting it too, so finally it's being taken seriously.

I just think it's been going on for so long untreated that it'll take SUCH a long time to see any improvement. I'm fully convinced that my mother was bipolar. She had all the classic symptoms of mania followed by depression. Now that the mania is gone, the depression is so much more noticeable.

 

[Disney Doll]

If they start her on anti-depressant meds, it could take up to 6 weeks to see a change. But you will see one.

 

[sha_lyn]

We do have a psychiatrist who will be checking her out. I've been saying for the past 10 years that my mother's depressed, but nobody listened (I'd been saying a lot of things for the past several years that are all of a sudden a surprise to everyone else now ). The AL place started suggesting it too, so finally it's being taken seriously.
I just think it's been going on for so long untreated that it'll take SUCH a long time to see any improvement. I'm fully convinced that my mother was bipolar. She had all the classic symptoms of mania followed by depression. Now that the mania is gone, the depression is so much more noticeable.

I know first hand how fustrating that can be. I still can't believe the things my family refused to see in my p-grandmother. She was very hard of hearing but refused to get hearing aids. I notice many yrs before her death that she had no idea what the person had said to her if she nodded and said yea yea instead of just saying yes. iIhad my dad and cousins curse at me for speaking so loud when there was no need since they thought she was hearing everything they said. I had been telling them for yrs that she doesn't hear most of what they say and she was always ask me to repeat after they left.
The day they cursed at me I had enough and asked my grandmother to repeat what they had jsut told her. Of course she had no idea.
If, just if they had been on board yrs before, I think we could have gotten her to wear hearing aids. I would even tell the how badly she did on hearing test at the Dr but they wouldn't beleive me, and of course they never had time to take her so they could see it first hand.

 

[mamacatnv]

Did you notice a difference in you mother's reaction to each place? And if so, what do you think made the difference to her?

When we placed her into the first facility she was just coming out of the psych hospital where she had been on an involuntary hold and had only recently been started on meds. She was very difficult to handle at first so it was hard to know her "reaction" to the first facility. The yelling, kicking and screaming would have taken place no matter where we put her. She was at the first facility for 4 months and during that time the meds kicked in and she calmed considerably. The weird thing about severe dementia patients (at least to me) was how they co-exist with each other but do not really interact with each other. I do know that there was a lot of squabbling amongst the residents, they would fight over dolls and stuffed animals.

When we moved her, she seemed to settle right in. The staff was very warm and welcoming and even though at the time she seemed to be in a zombie type state they talked to her and they showed her around, showed her all the facilities etc. They treated her like a normal functioning person who had just moved to a new location. They did not treat her like a non-existent person. Even now, when I am visiting, they don't talk about her to me they talk to her and let me hear. Does that make sense? She has been in this facility for 18 months, we have been able to back way off of her meds and she is actually doing really well. When either myself or my Aunt takes her somewhere, she is always anxious to return.

Since Mother has been there, the main staff members have not changed. Sure, the aides come and go although there are quite a few who have been there since the beginning. The director, the head of nursing and the floor nurse have been the same and have all been there for years. There is comfort in seeing the same faces and building relationships with the staff.

The other interesting thing about the new facility was that she became very close to another resident, a man. They spent a lot of time cuddling even kissing. When I got over the initial shock (my Aunt walked in on them one day, laying on Mothers bed kissing ) I realized that this behavior is very common. I think this man really helped in the transition to the new facility and I know that Mother and he were really close (as close as one can be in that type of condition) He passed away about 6 months after she moved in.

All in all, I do not think I could have found a better situation given all the obstacles that I had to deal with. Mother is safe, relatively happy and that is all I can really ask for at this point in time.

 

[ZipaDeeDooDah]

We do have a psychiatrist who will be checking her out. I've been saying for the past 10 years that my mother's depressed, but nobody listened (I'd been saying a lot of things for the past several years that are all of a sudden a surprise to everyone else now ). The AL place started suggesting it too, so finally it's being taken seriously.

I just think it's been going on for so long untreated that it'll take SUCH a long time to see any improvement. I'm fully convinced that my mother was bipolar. She had all the classic symptoms of mania followed by depression. Now that the mania is gone, the depression is so much more noticeable.

I hope you know how much I admire your candor.

This is such a difficult situation.

 

[ZipaDeeDooDah]

When we placed her into the first facility she was just coming out of the psych hospital where she had been on an involuntary hold and had only recently been started on meds. She was very difficult to handle at first so it was hard to know her "reaction" to the first facility. The yelling, kicking and screaming would have taken place no matter where we put her. She was at the first facility for 4 months and during that time the meds kicked in and she calmed considerably. The weird thing about severe dementia patients (at least to me) was how they co-exist with each other but do not really interact with each other. I do know that there was a lot of squabbling amongst the residents, they would fight over dolls and stuffed animals.

When we moved her, she seemed to settle right in. The staff was very warm and welcoming and even though at the time she seemed to be in a zombie type state they talked to her and they showed her around, showed her all the facilities etc. They treated her like a normal functioning person who had just moved to a new location. They did not treat her like a non-existent person. Even now, when I am visiting, they don't talk about her to me they talk to her and let me hear. Does that make sense? She has been in this facility for 18 months, we have been able to back way off of her meds and she is actually doing really well. When either myself or my Aunt takes her somewhere, she is always anxious to return.

Since Mother has been there, the main staff members have not changed. Sure, the aides come and go although there are quite a few who have been there since the beginning. The director, the head of nursing and the floor nurse have been the same and have all been there for years. There is comfort in seeing the same faces and building relationships with the staff.

The other interesting thing about the new facility was that she became very close to another resident, a man. They spent a lot of time cuddling even kissing. When I got over the initial shock (my Aunt walked in on them one day, laying on Mothers bed kissing ) I realized that this behavior is very common. I think this man really helped in the transition to the new facility and I know that Mother and he were really close (as close as one can be in that type of condition) He passed away about 6 months after she moved in.

All in all, I do not think I could have found a better situation given all the obstacles that I had to deal with. Mother is safe, relatively happy and that is all I can really ask for at this point in time.

I only hope that I can be as understanding of my mother's or father's frame of mind and well being when the time comes.

Your mother is very blessed.

 

[mamacatnv]

I only hope that I can be as understanding of my mother's or father's frame of mind and well being when the time comes.

Your mother is very blessed.

Thank you for the kind words. I think the reason I am able to make the choices I make is because I am not emotionally invested. I view the situation and make decisions on what I feel are in her best interest, not necessarily what she wants or what my Brother wants but what I truly feel will keep her safe and as happy as she can be in the state she is in.
I do have an Aunt who lives close to Mothers facility and she is the only one whose input I consider. She is the true angel in all this since she visits regularly, keeps an eye on things and takes Mother to her Dr's appts, makes sure she is clean and groomed etc. Due to distance, that is not something I can do. We have found we are a great team and when the time comes making care decisions for my Aunt will be much harder and more emotional than the care of Mother is because I have become very attached to my Aunt through this process.

 

[MushyMushy]

I hope you know how much I admire your candor.

This is such a difficult situation.

Thank you so much. I can't tell you how much I appreciate the support and kindness I've gotten here.

I've got another sad update. I went to see my mother for the first time in a few days yesterday and it's not good. She has gone so long without eating that she's a complete shell of herself. She can barely talk and she's completely bedridden. The nursing home has her on a pureed diet, but that's about the extent of what anyone can do. Nobody can force her to eat or put her on a feeding tube because of her advanced directives. When they are able to feed her, she's pouching her food in her cheeks.

They're sending her to the hospital on Monday for more tests. My sister and I both agree now that she's just waiting to die.

It's not going to be easy.

 

[Pea-n-Me]

I've got another sad update. I went to see my mother for the first time in a few days yesterday and it's not good. She has gone so long without eating that she's a complete shell of herself. She can barely talk and she's completely bedridden. The nursing home has her on a pureed diet, but that's about the extent of what anyone can do. Nobody can force her to eat or put her on a feeding tube because of her advanced directives. When they are able to feed her, she's pouching her food in her cheeks.

They're sending her to the hospital on Monday for more tests. My sister and I both agree now that she's just waiting to die.

In addition to medical testing, make sure they get a (stat) psychiatric consult as well. It might be complex to determine medical vs psychiatric causes here, though often it's a combination of the two. Keeping you and your Mom in my prayers. (The old adage is true, darn nurses make the worst patients! )

 

[Disney Doll]

 

[barkley]

Thank you so much. I can't tell you how much I appreciate the support and kindness I've gotten here.

I've got another sad update. I went to see my mother for the first time in a few days yesterday and it's not good. She has gone so long without eating that she's a complete shell of herself. She can barely talk and she's completely bedridden. The nursing home has her on a pureed diet, but that's about the extent of what anyone can do. Nobody can force her to eat or put her on a feeding tube because of her advanced directives. When they are able to feed her, she's pouching her food in her cheeks.

They're sending her to the hospital on Monday for more tests. My sister and I both agree now that she's just waiting to die.

It's not going to be easy.

i'm very sorry for what you are going through.

one of my aunts did the same thing. she had lived with my mother for years and unfortunatly my mother gave in to her manipulating behaviours. she later went to live with her son, her granddaughter and dil. the dil would'nt bow to the manipulation (she had a small child who needed her time and attention, she did'nt need to be doing things for my aunt who was capable of doing them with little or no assistance). they kept warning her that if she did'nt use her capabilities she could lose them. she did-ended up in a nursing home where she chose not to eat. doctors said it was sadly a common manipulation tool for the elderly (it was the one thing they absolutly could control-esp. if they had an amd prohibiting tube feeding).

you can only do what you can do. sounds like she's made her decision of how she wants to deal with the situation-make a decision to take care of yourself so you have the strength to deal with it.

 

[arielsleepingbeauty]

Thank you so much. I can't tell you how much I appreciate the support and kindness I've gotten here.

I've got another sad update. I went to see my mother for the first time in a few days yesterday and it's not good. She has gone so long without eating that she's a complete shell of herself. She can barely talk and she's completely bedridden. The nursing home has her on a pureed diet, but that's about the extent of what anyone can do. Nobody can force her to eat or put her on a feeding tube because of her advanced directives. When they are able to feed her, she's pouching her food in her cheeks.

They're sending her to the hospital on Monday for more tests. My sister and I both agree now that she's just waiting to die.

It's not going to be easy.

I am sorry that you are going through this. I just want to caution you as I have just gone through something similar with my grandmother. Please make sure that you keep on top of the nurses turning your mother where she is bedridden. I know that nurses are extremely busy, but she needs to be turned. She is not eating and if sher kin breaks down, without proper nutrition she may never heal. My grandmother was also diabetic and i had my mother ask for a special air mattress in the hospital.


I wish you the best.

 

[MEG&MINNIE]

i'm very sorry for what you are going through.
you can only do what you can do. sounds like she's made her decision of how she wants to deal with the situation-make a decision to take care of yourself so you have the strength to deal with it.

My thoughts go out to you ,too.
You can only do so much and alot of their behaviors are the only thing they can control. My father gave up eating, stopped taking meds ,refused medical attention ( when it was obvious...pools of blood throught his apt). They told me as long as he was competent ...he could make all of his own decisons...even if it was self neglect. All he wanted to do was die.

It's a tough situation to be in as an adult caring for your elderly parents. All you can do is know that she is in a safe environment and being looked after by the nursing staff.
Like Barkley said ....take care of yourself so you have the strength to deal with it.

 

[Disney Doll]

You have really done the best you can in a difficult situation, dealing with a difficult person.

I try to put myself into my patients' place sometimes...consider being older...if not chronologically then physically...you can't do what you want, you can't go where you want, you really probably have little or no enjoyment. Would you want to live? And even if it is a situaiton that is partially of her own making, would you want osmeone telling you that you "have to" do this and you "have to" do that? If she's been manic/depressive, and now seems to be leaning toward depressive, maybe it just seems like too much for her to bear???

I remember a couple of years back trying to convince my then-80 year old mother to go for a colonscopy...a screening one, she wasn't having a problem. I told her all the logic that we tell all patients. She just didn't want to have one. I told her that if she had colon cancer and it was caught early, she'd live, otherwise she'd probably die within a few years. She looked at me and said "So if I die within a few years, I'll be 82 or 83 or 84 and what's wrong with dying when you are in your 80's?". And you know, I had no good answer for her, because she was right. She's had a good happy life, she's seen her children grow up and be successful, she's contented.

So I stopped talking about it. And she's 82 now and still here, and we haven't been arguing about her having a colonoscopy, so we've been enjoying each other instead.

Acceptance is the hardest thing to come to...

 

[MushyMushy]

The doctor called yesterday and now thinks my mother has Parkinson's Disease.

I'm completely stunned. After reading the list of symptoms, it makes sense. I never knew Parkinson's could just sneak up on you like that.

I still don't know too much about it or what the prognosis is. I really need to look more into it, but from what I understand, it's not good, right? We had a neighbor who had a very advanced case of it. He was incapacitated -- couldn't walk or talk. But then he had some type of surgery and was back to work as a truck driver within the year. I don't hold out much hope that it's an option for my mother, though.

 

[Pea-n-Me]

This is an interesting update.

People with Parkinson's have trouble "getting going". Which *could* in her case help explain why she had difficulty moving. Link here.

BTW, the aunt I've referred to in my posts here also had issues with Parkinson's, only in her case they think it was a "pseudo Parkinson's" related to her Alzheimer's disease (all neurological). At any rate, whether it was actual or pseudo, it caused the same type of symptoms and she took the same medication for it. FYI.

 

[ZipaDeeDooDah]

This is an interesting update.

People with Parkinson's have trouble "getting going". Which *could* in her case help explain why she had difficulty moving. Link here.

BTW, the aunt I've referred to in my posts here also had issues with Parkinson's, only in her case they think it was a "pseudo Parkinson's" related to her Alzheimer's disease (all neurological). At any rate, whether it was actual or pseudo, it caused the same type of symptoms and she took the same medication for it. FYI.

Pea-n-Me - you are very wise.

 

[ZipaDeeDooDah]

The doctor called yesterday and now thinks my mother has Parkinson's Disease.

I'm completely stunned. After reading the list of symptoms, it makes sense. I never knew Parkinson's could just sneak up on you like that.

I still don't know too much about it or what the prognosis is. I really need to look more into it, but from what I understand, it's not good, right? We had a neighbor who had a very advanced case of it. He was incapacitated -- couldn't walk or talk. But then he had some type of surgery and was back to work as a truck driver within the year. I don't hold out much hope that it's an option for my mother, though.

MushyMushy

Once again I appreciate your candor, and I learn something with every post in this thread.