Moved to dementia nursing today

Patricia Alice

Registered User
Mar 2, 2015
179
Today has been the hardest day ever. Mum was served notice in the 'dementia residential 'home of 28 days and we were told she was dementia nursing; I don't think she is.

We have found a lovely home only 5 mins from my home, very expensive top up but the homes social services were sending us to were miles away. It is though, mainly for people with challenging behaviour. My mom gets agitated and frightened but she does not hit out.

She has now been separated from her sister who remains at the residential home as she is not as far advanced as mom, although my mom is quite aware of who we are and can hold a conversation to some extent.

I have cried so much today, mom begged us to take her with us. There are only about 3 other people who could hold a conversation with her apart from staff. I tried to take her to her new room but she was firmly stuck to the floor and would not move, she looked so small and frail.

Am I in denial?
Will she settle?
Why am I feeling so guilty?

Tonight I have chest pains and palpitations and I feel sick to the stomach.

I wish I could afford to pay for 24hr care, I would gladly do this for such a wonderful caring mum, but I can't.
 

stanleypj

Registered User
Dec 8, 2011
10,707
North West
Sorry Patricia, I don't know the precise circumstances, but if nursing care is involved, is your mum being considered for Continuing Health Care?
 

Clueless2

Registered User
May 14, 2015
34
Today has been the hardest day ever. Mum was served notice in the 'dementia residential 'home of 28 days and we were told she was dementia nursing; I don't think she is.

We have found a lovely home only 5 mins from my home, very expensive top up but the homes social services were sending us to were miles away. It is though, mainly for people with challenging behaviour. My mom gets agitated and frightened but she does not hit out.

She has now been separated from her sister who remains at the residential home as she is not as far advanced as mom, although my mom is quite aware of who we are and can hold a conversation to some extent.

I have cried so much today, mom begged us to take her with us. There are only about 3 other people who could hold a conversation with her apart from staff. I tried to take her to her new room but she was firmly stuck to the floor and would not move, she looked so small and frail.

Am I in denial?
Will she settle?
Why am I feeling so guilty?

Tonight I have chest pains and palpitations and I feel sick to the stomach.

I wish I could afford to pay for 24hr care, I would gladly do this for such a wonderful caring mum, but I can't.
Patricia, my mum will be moving into a care home next week. It will be 4 months since her beloved husband passed away, we did not and never will tell her that sad news.

My parents began 24 hour live in care 9 months ago, when my dad needed palliative chemo and care. Whilst the carers have been wonderful, we have reached that point in our journey where mums needs, aggressiveness and anxiety can no longer best be managed at home.

Like you I am heartbroken, but my head is telling me that each day I will still be ensuring that she is safe and attended to, just no longer where she or I might wish her to be. I guess I am trying to say that even 24 hour live in care isn't always sufficient. Good luck.
 

Patricia Alice

Registered User
Mar 2, 2015
179
Sorry Patricia, I don't know the precise circumstances, but if nursing care is involved, is your mum being considered for Continuing Health Care?
Yes have been put forward for CHC by psychiatrist, a meeting is being arranged.

I feel a little more at ease now 3 days in, but I know she will never settle and seeing us seems to upset her more. The care seems very good.

I will start to drop a day visiting here and there in a couple of weeks.
 

Patricia Alice

Registered User
Mar 2, 2015
179
Patricia, my mum will be moving into a care home next week. It will be 4 months since her beloved husband passed away, we did not and never will tell her that sad news.

My parents began 24 hour live in care 9 months ago, when my dad needed palliative chemo and care. Whilst the carers have been wonderful, we have reached that point in our journey where mums needs, aggressiveness and anxiety can no longer best be managed at home.

Like you I am heartbroken, but my head is telling me that each day I will still be ensuring that she is safe and attended to, just no longer where she or I might wish her to be. I guess I am trying to say that even 24 hour live in care isn't always sufficient. Good luck.
Hi and thank you.

I know it would not work really, I think it is just the guilt trip I am feeling right now and boy, does my mother know how to make you feel guilty, emotional blackmail is her specialist subject :)

I am sorry about your dad, yes your mom would need more interaction and would get that from a care home (a decent one), but do your homework and ask lots of questions.

Good luck with everything xx
 

ferniegirl

Registered User
May 10, 2015
54
Surrey, UK
Hi Patricia, I do hope your mum will settle. I, too, felt that my mum would never settle. It is nearly two weeks since I took my mum to the dementia home, separating her from dad, and I visited today for the first time. She is obviously being very well cared for and was not agitated but very bewildered. Can't remember how she got there (thank goodness) and thinks she is in a shop or a cruise-ship! My mum, like yours was brilliant at emotional blackmail but she seems to have gone beyond that now. What I found so hard today were the people in the unit who are worse than her, shouting out etc, the poor things. Surprisingly, she didn't seem too perturbed by this. I found it very upsetting. I hated leaving her there and she got tearful when my sister and I left.

How is your mum's sister, do you know? My dad seems reasonably accepting of the fact that mum needed more specialist care but I know he misses her.

The whole thing is so, so sad. I hope you are feeling a bit better physically x

X
 

Patricia Alice

Registered User
Mar 2, 2015
179
Hi Patricia, I do hope your mum will settle. I, too, felt that my mum would never settle. It is nearly two weeks since I took my mum to the dementia home, separating her from dad, and I visited today for the first time. She is obviously being very well cared for and was not agitated but very bewildered. Can't remember how she got there (thank goodness) and thinks she is in a shop or a cruise-ship! My mum, like yours was brilliant at emotional blackmail but she seems to have gone beyond that now. What I found so hard today were the people in the unit who are worse than her, shouting out etc, the poor things. Surprisingly, she didn't seem too perturbed by this. I found it very upsetting. I hated leaving her there and she got tearful when my sister and I left.

How is your mum's sister, do you know? My dad seems reasonably accepting of the fact that mum needed more specialist care but I know he misses her.

The whole thing is so, so sad. I hope you are feeling a bit better physically x

X
Hi Fernie,

Bad, bad day, the same as you really. The home seems very caring but she is amongst people far worse than she is. One lady was screaming constantly (which started to get to me.) I know this is so very sad, but my mom is definitely not at this level yet, she is somewhere in-between and only two other people she can interact with besides the carers who are busy. She is agitated and just wants us. She is crying constantly when we are there. It is breaking our hearts.

In the conservatory a carer was doing a one on one with a lady with more challenging behaviour, she could see us sitting there and was shouting expletives to us and threatening us, so they had to close the blinds so she could not see us.

If my mom fails to settle soon I think I am going to ask to have her reassessed for normal emi and not nursing, because I feel the environment she is in is not fair on her yet, and certainly causing us distress leaving her there to come back to our homes and family.

I feel so ill with anxiety.
 

stanleypj

Registered User
Dec 8, 2011
10,707
North West
I'm so sorry to hear this Patricia. It's the kind of thing that everyone dreads. I suppose the only thing you can say is that there have been TP posts about people who have had very distressing starts but who eventually do settle in. I do hope things start to settle down a bit before too long. If they don't you still have the option of asking for a re-assessment.
 

canary

Registered User
Feb 25, 2014
11,285
South coast
Im sorry you are having problems and I can hear how upset you are, but, in fairness, it has only been a few days. Any change is going to be upsetting for your mum and it will take her a good couple of weeks to begin to settle and probably a couple of months to really settle down.
I know it is always hard to accept progression, but if your mum is already at the "in between" stage then before long she will need the sort of home she is in now. If you succeed in moving her back to an ordinary unit you will probably be faced with yet another move in the not too distant future.
Perhaps it would be a good idea to not visit for a few days and instead phone the NH and find out from the staff how she is?
 

ferniegirl

Registered User
May 10, 2015
54
Surrey, UK
Hi Fernie,

Bad, bad day, the same as you really. The home seems very caring but she is amongst people far worse than she is. One lady was screaming constantly (which started to get to me.) I know this is so very sad, but my mom is definitely not at this level yet, she is somewhere in-between and only two other people she can interact with besides the carers who are busy. She is agitated and just wants us. She is crying constantly when we are there. It is breaking our hearts.

In the conservatory a carer was doing a one on one with a lady with more challenging behaviour, she could see us sitting there and was shouting expletives to us and threatening us, so they had to close the blinds so she could not see us.

If my mom fails to settle soon I think I am going to ask to have her reassessed for normal emi and not nursing, because I feel the environment she is in is not fair on her yet, and certainly causing us distress leaving her there to come back to our homes and family.

I feel so ill with anxiety.
Oh I know, I feel anxious too. We were told not to visit regularly at first to give mum a chance to settle which is why we left it a couple of weeks but phoned the home regularly.
Even though it is the best thing, it feels so wrong to do that but my mum has no concept of time so I try to comfort myself with that. Like you, I wish these homes had different areas so that the severely affected,noisy patients can be separate from the others. I have to say though, I think I was more upset than mum about that. Horrible for you to be shouted at during your visit.

I just don't know how to come to terms with all this. I suppose it's a time thing. I think I am still in a bit of shock and can't believe how quickly this has all happened and that it has happened at all. There has been no other dementia in our family so it never occurred to us that this would happen to mum.

Thinking of you x
 

Patricia Alice

Registered User
Mar 2, 2015
179
I'm so sorry to hear this Patricia. It's the kind of thing that everyone dreads. I suppose the only thing you can say is that there have been TP posts about people who have had very distressing starts but who eventually do settle in. I do hope things start to settle down a bit before too long. If they don't you still have the option of asking for a re-assessment.
Thank you Stanley,

I know I have to give it more time right now, but I am going to keep my options open and will make a more rational decision in a few weeks.
 

Patricia Alice

Registered User
Mar 2, 2015
179
Im sorry you are having problems and I can hear how upset you are, but, in fairness, it has only been a few days. Any change is going to be upsetting for your mum and it will take her a good couple of weeks to begin to settle and probably a couple of months to really settle down.
I know it is always hard to accept progression, but if your mum is already at the "in between" stage then before long she will need the sort of home she is in now. If you succeed in moving her back to an ordinary unit you will probably be faced with yet another move in the not too distant future.
Perhaps it would be a good idea to not visit for a few days and instead phone the NH and find out from the staff how she is?
Thank you for replying Canary.

I know exactly where you are coming from, but I am not sure this is the right place in my heart. I will give it more time to see. My head is all over the place with worry.