Mom hates the nursing home

Hi 73Monte, welcome to the Alzheimers site! I too post on another forum, but since my Mom has Dementia, I also frequent this site. I'm not sure how long your Mom has been in the facility. Is it a nursing home or a memory care? Does she have her own room?

We had in home care for my parents, and after my Dad died we continued with 24 hour care for my Mom. It's not cheap, but it can be done. There are other options as well; if she likes to be around other people, you could have her go to and Adult Day Care Center a couple of days a week. These centers are fabulous -- the folks get stimulation from others, plus the activities they do.

We did end up with my Mom in a Memory Care Center -- we didn't know how she would do because she is such a little and quiet person. She's gained ten pounds and enjoys her "place." It's only about a 45 person center, but it's like a big house and the care there is fabulous. She gets regular meals and takes her meds on queue, plus she is always involved in activities. She closer to my other three siblings, but a lot further from me...and they take great care of her.

I hope you and your Mom find some peace. It's so hard and yes, we all have the guilty feelings of not thinking we are doing the best for these fine people; but sometimes I think if we are feeling that way that we must be doing the best that we can -- because if we weren't we wouldn't care. Make sense or not?

Carol

Thanks Gizzy/Lonie for your replies,

My Mom is in a Nursing home, and she does have her own room. I've had her in an adult day programme for the last couple of years when she was still residing at home.

I don't have any other experiences with Nursing homes. We selected this one because my Brother's Mother-in-law is in there, and it's also only a block from my house.

It's only been a week, but I just don't like what I'm seeing right now. My Brother doesn't share my view at all, and is quite content to leave her there. He doesn't want me visiting her for at least 6 weeks, to give her time to adapt.

I just can't conform to that, as I already feel like I've abandoned her. Also, I've been the one taking care of her for the last 3 years. My two Brother's have wanted nothing to do with her over that time, outside of her Birthday and Christmas. I understand that this is quite common, and have heard from many others that have similar circumstances.

What bothers me the most is, if I had of just taken a tour there before agreeing to put my Mom in there, I would of said no way.

Now I feel like I have to give it a chance. In the meantime, I'm going to start looking at some other homes to see how they compare.

To 73monte ...

  The term nursing home seems to often get used to describe different types of facilities. The definition given to me when I was searching 11-months ago was ... a nursing home was a facility where State licensing existed to allow for an IV to be placed and monitored on a patient. It does imply, at least in Illinois, that a Nursing Home is qualified to perform some of the more rudimentory actions by the nurse or the staff that a hospital might normally perform.

  The other types of living environments are not allowed that degree of medical support or interactions - at least, in this State. I would guess that this changes by the State, and the available patient programs (to keep their minds stimulated) probably change from location to location.

  Please do give your Mothers facility some time ... ask plenty of questions when you do go ... and quietly observe how everyone is treated when you're there.

  As far as frequency of going there, I can't play amateur psycologist here. But personally, I don't think allowing 6-weeks or whatever timeframe seems right to stay away initially is right. I think in order for a patient to feel comfortable in new surroundings, there does need to be a certain amount of "doing it on her own"! But ... there also needs to be a certain amount of "love from home" on a regular basis. You don't want her to feel like she was abandoned.

  From the first week, my Mother went into her Home - last September - I have been there every week, but just once a week. My daughter has come with me 4 or 5 of those times. My dog has come with me 4 or 5 of those times. Yep ... they believe in that ... where she lives! And my daughter told me, on Mothers Day when all three of us visited, "Grandma seemed to be happiest to see Gizmo"!

 

  Take a little time. Don't beat yourself up for putting her in there - either so soon or without checking more places out first. It is a difficult decision ... and feedback from Mom might not be so accurate so soon.

Best wishes ...... anbd peace to you and yours.   

To 73monte ...

  "Nothing to do all day" is not a good thing. Is there a Social Director or similar position there - a person who you could ask to describe what is typically planned for a day? A large activity schedule of available things to do - is so important for a dementia patient. Many patients might not want to do much (in terms of activities) - and it shouldn't be forced, but it should be available.

  I have watched Mom (along with others) play Bingo - but the bingo game was set up with pictures of seasonal things - rather than numbers. I saw how difficult it was, at times, for Mom (and others) to identify a picture of a blouse (for example) after the word "blouse" was called out. Compared to playing by the traditional bingo numbers, it was sometimes difficult ... but it made each of the patients "think"!!! And that was the idea - to present small challenges to the mind.

  By the way, my Mother still does complain every other visit or so, that she wants to go home - or how much longer will she have to be there ... and that's after being there for over 10-months now. But, when I watch her playing bingo, or sitting thru an Elvis impersonator, or singing along with an entertainer - she is having a good time, and doing some things that would not be possible if she was home alone - or with a caregiver.

  It's bad enough for a person to be displaced (if you will) and away from all familiar things ... and it's even worse when dementia is a part of it. I remember some of my Mothers first symtoms of dementia (although I didn't know it at the time) - of distrust! And, I think, when you picture someone with distrust issues - then going into a strange place, it could be very scary, or at least uncomfortable for that peraon.

  I hope the Nursing home your Mother is in does have a program of some things daily to challenge her mind. I think it's so important for the mind to be challenged to an extent - to be kept busy - I guess!

Wishing you and yours well.

I talk to my mom every evening and every evening she tells me "it's been a long, nothing day." First rule, do NOT believe what a person with dementia is telling you. Where my mom lives, they have activities all day long and early evening. My mom's days may be long and nothing but it is because she refuses to participate. Residents canNOT be forced to do anything, they have rights. Same with showers. As disgusting as this may sound, my mom has not had a shower now for FIVE WEEKS. Thankfully, they are able to get her to wash up at the sink in the morning, they call it PTA (Pits, t**s, and a**)...I was horrified at first but now I realize there is only so much one can do. I truly believe my mom's refusal of medications and showers is her fight to have some control of her life. Those are the only two things left she can control. She was always very independent, VERY stubborn. By the way, the place where she is living, it is skilled nursing care, rated 5 star, highest rating and considered once of the best in this area. The head nurse has worked on her floor for 23 years and tells me all the time how much she loves her job. For the life of me, I have no idea how she can handle it. I get off the elevator, look around and immediately get depressed

Have you looked into residential care homes? Sometimes those are more "homey" and have a less institutional setting because they are an actual home. They are equipped for elderly needs and have about 6-10 people at the most per home. She might be more comfortable in a smaller place like that.

Yes, that's about the cost here in the US for either retirement or care homes...and in home care is even more expensive. It's tough because there are not a lot of affordable options for our elderly. I think our age group is really the first to run into these issues because people are living so much longer. That's the good thing about having a support forum. In regard to the inhouse caregiving -- I think it's a roll of the dice. My parents had some fabulous women come in, and then the next day, someone else that I had to keep my eye on. It's a tough thing. Is the govt program the one that hires the staff, or do you have a say?

Lonie,
My mom does NOT wear adult underwear, she is continent. Amazing that she is, because it seems she has lost her mind, seriously. She has been on Namenda and Aricept, two dementia meds for ten years now and I think what has happened is that they simply stopped working. Either that, or because of her refusal to take her meds, well, if she doesn't take them, they can't be working. It's such a frustrating situation. My sisters and I were told when we placed mom and they interviewed and assessed her and put her on the Alzheimer's/dementia floor, the "locked floor" even though she does not wander, we were told she needed to be there because of the specialized care. And yet they are not able to take care of her. Why? She refuses. Before it was a game with her. She would negotiate with them, with her meds, she would say "you take half and I'll take half"...eventually she would take them. Now, she purses her lips shut tight and swings her head back and forth. If the persist, she starts swinging, trying to hit them, calling them some really horrible names. My mother NEVER used foul language, never. I can't believe what is coming out of her mouth now. And the refusal to shower. How disgusting is that? And again, it's not that the staff doesn't try. They try to make a game of it. She loves to get a back massage, loves to get her back scratched, they do all this while taking her to the spa room and once she is there, she fights them and screams and carries on so much, they have to stop. My mother is a holocaust survivor, so there may be some issues going on here that have to do with the showers. We simply do not know. As much as she has lost, she is still continent...amazing and thank goodness. She does still recognize me and my sisters, but at times does not know who we are. Honestly, as horrible as this sounds, I see no quality of life. And the cost? $9,600 a month. They are all private rooms with a bathroom, but no shower in the room. As I have mentioned, mom is public aid pending and they are only taking her social security check and allowing her to live there while we wait to see if she is accepted on public aid. It is a nightmare and has made a mess out of me. I am seeing a psychotherapist and a psychiatrist for depression and anxiety. All the phone calls I receive from the nurses, the doctors, the administration, certified letters to sign off on correspondence, and then having to explain everything to my sisters, who are not even on the same page with me. I feel as if I am losing my mind. And the calls from mom. She is able to call, we have a phone that we can program our numbers into so all she does is push a button that has our photo on it. She calls me at least 6 times a day telling me how lonely she is and yet when people try to spend time with her, she screams at them and throws them out of her room. Yes, I visit with her, but I cannot continue to go as often as I have been. It's tearing me apart. I truly understand now why they say Alzheimer's is so hard on the family, not necessarily the patient. My mom has no idea what is going on, from one minute to the next. All I want for her is to be safe and not suffer, that is all.

To 73monte ...

   Going back to your original thread posting - you might consider putting her back into her own home with 24/7 care - but, be careful!

   My Mother's experience with an in-home caregiver was really pretty good, but there were a few times when Mom's temper pushed the caregiver to her limits. Actually, in 15-months her week-end caregiver was changed 3 times. Her weekday caregiver stayed the entire 15-months. Some of it was caregiver patience level - and some of it was caregiver experience with dementia.

   As long as your Mom's doctor hasn't said she needs medical care - like that of an RN, it would seem you have the choice or option. While the home is of course more comfortable, I've been told that dementia patients can become much more bossy - being that it's their own home - and why should they listen to some stranger in their own home.

   And many of the dementia programed assisted living or nursing homes have so many things for their patients to do. Yep ...most will resist. And nearly all want to go back home ... but, does a dementia patient know what's best for her or him?

   My Mother has been in her Assisted Living home for dementia for over 10-months now. It has been a few months since she has said "will she ever go home again"! It is a dificult situation to "watch" ... but again, what is really for her best interests!

Strength to you and yours.

Thanks for all the replies, (again).

All of you have made some very good suggestions.

I've come to the conclusion that the best possible solution for my Mom would be a retirement home that offers assisted living.

There's only one in my area, and I've set up an appt. to visit next week. If this doesn't pan out, then I'm at a total loss, and will likely have to keep in the nursing home that she's currently at.

I did visit one other, but while it was a 5 star facility, it was just too independent for my Mom. The actiivities were great, the staff was excellent, the food and apartments were unbelievable. But they just didn't offer enough assistance.

Tom.

Dear Franklen,

You are a SAINT. My mom was diagnosed with Alzheimer's ten years' ago. I took mom into my home for the first year. I was working full time and had a caregiver in the home with mom. Mom was pretty independent but because of her memory issues and confusion, she just could not be left alone. She HATED that I had someone here to "babysit" her. She tormented this poor woman, a true angel, what a love. When I was home, I was with mom. I do not know what your father is like, but my mom would continuously repeat things, over and over and yes, I truly understand it is the disease, NOT her fault, but I could only listen to it so long. I thought I was going to go mad. I became horribly depressed. I have two sisters that did help, but didn't understand how much I needed them. They would pick up mom for two hours on a weekend and then bring her back.

I must say I agree with you about the nursing homes, but for some that is the only answer.

My mom's journey continues. We just moved her into a skilled nursing facility, about four months' ago and boy did that confuse her. It is the change that causes such confusion. Had your father stayed longer, he would have settled in. We had to move her to another room, for her safety, because she falls so often, they wanted her nearer to the nurse's station and so again we went through ten days of hell, well she did and she took us with her.

Alzheimer's is a horrible, horrible disease. The only saving grace is that the patient doesn't remember. My mother has no short term memory, none. But, she remember her three daughters, probably because we are there so often. We make it our business to visit her often, so the staff are very aware family is involved and watching. I also attend family council meetings once a month at the facility.

I must say I admire you so much, to have such love for your family, and patience. You are a very rare gem indeed.

Miriam

Hello .....

   Regarding the choice ... sometimes there is no choice! In my case, my Mother 2-1/2 years ago was rushed to the hospital after a fall in her home. Her neighbor was the first to find her, after my call to Mom went unanswered. I live 20-miles away and have had major meical problems myself, but have been calling my Mother every day at 5pm or so ... since my Father died 18-years ago.

   When she didn't answer, I called her neighbor ... then met them both at the hospital ER. When Mom was released, the doctor said "she cannot go home unless she has a 24/7 licensed caregiver staying with her"! And I have a 2-story townhouse with both bedrooms on the second floor. Mom's house is a one-story two bedroom house - not to mention that she was not going to leave her house of almost 60-years. Of course, Mom could not climb stairs either!

   Then, last August, the dementia progresses to a point of her becoming hysterical at times late at night. She was brought into the hospital, and had close to 30-days of observation. When she was released last Septmeber, the doctors order were "she cannot go back home under the care of her caregivers - she needs to be under the care of a licensed nurse"!

   So ... that is what choice there was!!! Only ... which institution!!!!

   Incidentally, while I was in to see my Psychologist for terminal diseases last Saturday, he did say there is a big difference between alzheimers and dementia. I will be seeing that doctor again this Saturday, and will get a detailed definition of the differences. I will post what he has to say!