My Mum

[Boboozie]

Mum has had Diagnosed Dementia for about 5 years. This last year she has got a lot worse. She lives in which
was a Warden run Sheltered Accommodation. So its a flat in a complex now. She is 90 years young. Lives alone in her little flat. She basically goes to Common Room in the mornings for a cuppa and then just sits and watches TV all day. She is at the stage where she does very strange things. She has Carers who go in four times a day. She has started refusing to get her PJs on so sleeps in her clothes. Gets dirty washing out and puts it on. Hides food. Eats very little. Drinks very little. Mum has had a Doctor call twice last week to see her as Carers have said Mum is not herself, very confused. Possible water infection which Mum was given Antibiotics. Doctor came out again because Carers were worried about Mum? Mum does have quite bad toilet problems. Mum gets poo everywhere. She wipes her bottom with her hand then wipes on a towel. She has been a mess in the morning and walked it all through the flat. Doctors have said maybe it time to move her into Special Care now. My Sister and Myself are Mums main Carers. I cannot come to terms with this. I cannot bring myself to do this even though it may be better for her??
Any advice or experience with this painful decision would be very much appreciated.

 

[love.dad.but..]

Am sorry to hear that your mum is struggling.When the point has been reached where extra support in the home is not enough the next step of care home is what they need not what they or you want but it is probably in the pwd best interests. All of us who have reached this point have very reluctantly taken this step but have also realised that as the illness progresses the person needs a team of carers around them to keep them safe and looked after. This is not to be critical of your care...you and your sister with the support of 4 carer visits a day have done a very good job for your mum but it is the kindest decisions that have to be made that can be the hardest.

 

[karaokePete]

Hello @Boboozie, it’s unfortunate that you have had to find yourself on TP, but you are welcome here nonetheless.

I think you have answered your own question when you say that 24hr care may be better for your mum. Don’t let a feeling of guilt stop you making the right decision. All carers have to fight what we call the guilt monster at times when we feel we just haven’t or aren’t doing enough or that we aren’t doing things right. However, when you know the person with dementia needs additional care and we are advised by the experts that this is so we should be satisfied that we are doing the right thing.

I wish you the strength you need at this time.

 

[Boboozie]

Am sorry to hear that your mum is struggling.When the point has been reached where extra support in the home is not enough the next step of care home is what they need not what they or you want but it is probably in the pwd best interests. All of us who have reached this point have very reluctantly taken this step but have also realised that as the illness progresses the person needs a team of carers around them to keep them safe and looked after. This is not to be critical of your care...you and your sister with the support of 4 carer visits a day have done a very good job for your mum but it is the kindest decisions that have to be made that can be the hardest.

Thank you for your reply. Its spinning around in my head all of the time. Should we shouldn't we?
Its probably the hardest decision we have ever had to make and have no idea where to start. We have a Care home in mind which is only up the road from where Mum lives so I think we may go and have a look round and have a chat this week and then take it from there.

 

[Boboozie]

Hello @Boboozie, it’s unfortunate that you have had to find yourself on TP, but you are welcome here nonetheless.

I think you have answered your own question when you say that 24hr care may be better for your mum. Don’t let a feeling of guilt stop you making the right decision. All carers have to fight what we call the guilt monster at times when we feel we just haven’t or aren’t doing enough or that we aren’t doing things right. However, when you know the person with dementia needs additional care and we are advised by the experts that this is so we should be satisfied that we are doing the right thing.

I wish you the strength you need at this time.

Thank you for your reply. Yes you are right about the guilt monster. I think its the thought of having to tell me Mum she has to move out of the flat that she loves. Its the hardest decision we have ever had to make. I really do not want to upset her.

 

[nae sporran]

Sorry you have such a hard decision to make boboozie. It's good that your mum's carers are on the ball and call the doctor out so frequently.
I've not had to do it myself, but I know others have resorted to love lies where you tell your mum her carer home is only a temporary move while her current home is being renovated. Once she settles in she may forget about the old flat. Good luck with the viewings and best wishes for everything you have to do.

 

[karaokePete]

Thank you for your reply. Yes you are right about the guilt monster. I think its the thought of having to tell me Mum she has to move out of the flat that she loves. Its the hardest decision we have ever had to make. I really do not want to upset her.

As @nae sporran has said, you may find that your mum is upset at first but she may settle. Indeed, you may get a boost as sometimes the 24hr care and extra social interaction produces a rally in the person and you may get to see and enjoy an improvement.
In relation to any settling in it sometimes helps to stay away from a Home for a while as the person can get unsettled by seeing you. The home itself may have suggestions in this regard. When people do visit they often leave things like coats in the car and then just leave when the person is distracted by an activity or meal time so that they don't notice and get upset by the parting every time.
I'm sure others will come along with suggestions for you.
I know it's hard. Don't forget that your fellow members of TP will be here for you if you want to ask a question or unload.

 

[Boboozie]

Sorry you have such a hard decision to make boboozie. It's good that your mum's carers are on the ball and call the doctor out so frequently.
I've not had to do it myself, but I know others have resorted to love lies where you tell your mum her carer home is only a temporary move while her current home is being renovated. Once she settles in she may forget about the old flat. Good luck with the viewings and best wishes for everything you have to do.

Thank you. That's another thing that's getting to me is having to tell her lies. We are hoping that if we do move her that she will forget about the flat and settle quite easily when she gets her bearings.

 

[Boboozie]

As @nae sporran has said, you may find that your mum is upset at first but she may settle. Indeed, you may get a boost as sometimes the 24hr care and extra social interaction produces a rally in the person and you may get to see and enjoy an improvement.
In relation to any settling in it sometimes helps to stay away from a Home for a while as the person can get unsettled by seeing you. The home itself may have suggestions in this regard. When people do visit they often leave things like coats in the car and then just leave when the person is distracted by an activity or meal time so that they don't notice and get upset by the parting every time.
I'm sure others will come along with suggestions for you.
I know it's hard. Don't forget that your fellow members of TP will be here for you if you want to ask a question or unload.

To be honest I cannot imagine not going to see Mum every week. That would be really hard for me to do. Surely if I do that she will forget who I am completely.

 

[karaokePete]

To be honest I cannot imagine not going to see Mum every week. That would be really hard for me to do. Surely if I do that she will forget who I am completely.

Maybe I didn't say that correctly. A Care Home may advise not visiting for a number of days and the period varies. However, that is just for any settling in period and it's to help the person with dementia settle. You will indeed want to visit and, once she is settled, you may see a happier and improved person because of the 24hr care. However, no one will stop you visiting right from the start. If you do visit right from the start just be prepared for the fact that your mum may be unsettled by your visit insofar as she is likely to beg to go home because she hasn't had time to get used to her new residence.
The bottom line is that I'm just offering suggestions and pointing out what you are likely to find. You may totally ignore what I have said if you wish. Indeed, you may find that what I suggest doesn't happen as every person with dementia is different. You know your situation better that me.
I do hope it works out for you both and I won't say anything more beyond that.

 

[Boboozie]

Maybe I didn't say that correctly. A Care Home may advise not visiting for a number of days and the period varies. However, that is just for any settling in period and it's to help the person with dementia settle. You will indeed want to visit and, once she is settled, you may see a happier and improved person because of the 24hr care. However, no one will stop you visiting right from the start. If you do visit right from the start just be prepared for the fact that your mum may be unsettled by your visit insofar as she is likely to beg to go home because she hasn't had time to get used to her new residence.
The bottom line is that I'm just offering suggestions and pointing out what you are likely to find. You may totally ignore what I have said if you wish. Indeed, you may find that what I suggest doesn't happen as every person with dementia is different. You know your situation better that me.
I do hope it works out for you both and I won't say anything more beyond that.

Thank you so much for your advice. I'm sure when I have visited the Care home we have in mind that I will feel a bit better about it all.

 

[Toony Oony]

Hi Boboozie - reading your post took me straight back to the decision I had to make last summer. Deep down I knew what I had to do, and the lovely people on this site helped me with the guilt monster and setting the ball rolling.
My Mum was also in her own flat in a sheltered housing complex - and struggling. There was an onsite warden and I had organised carers twice a day - but despite bolting on as much help as I could, everything started to unravel. Toileting was not an issue then, but eating was. The less Mum ate, the more confused she got, she could not look after herself, was doing strange things and she was always frightened. I tried to keep Mum as independent for as long as possible, but I realised that a decision had to be made. I viewed several CH's to be prepared. The very next week Mum had a really bad week, her GP and carers agreed that 24 hour care was needed and it all happened very quickly. I persuaded her to go for 2 weeks 'holiday' being looked after at a 'lovely place' very close to my home. I organised 2 weeks respite with an option to make things permanent. The first couple of days she was very cross with me (I visited briefly each day), then she calmed down. Not once did she mention her flat and seemed to have no recall of it, or the things in it at all.
It was only once she was in the CH that I fully appreciated how bad her dementia had become - she had covered quite well when on her own.

It saddens me to see some of Mum's old friends, still independent and enjoying life in their twilight years, while Mum has lost that. But I have never regretted my decision. Mum is well looked after and safe. In the last 6 months she deteriorated considerably - and I am so grateful that I moved her when I did rather than in a crisis situation.

There comes a time when you have to be strong for the person you love, as much as that may hurt. Sending thoughts and good wishes to you and your Mum.

 

[Boboozie]

Hi Boboozie - reading your post took me straight back to the decision I had to make last summer. Deep down I knew what I had to do, and the lovely people on this site helped me with the guilt monster and setting the ball rolling.
My Mum was also in her own flat in a sheltered housing complex - and struggling. There was an onsite warden and I had organised carers twice a day - but despite bolting on as much help as I could, everything started to unravel. Toileting was not an issue then, but eating was. The less Mum ate, the more confused she got, she could not look after herself, was doing strange things and she was always frightened. I tried to keep Mum as independent for as long as possible, but I realised that a decision had to be made. I viewed several CH's to be prepared. The very next week Mum had a really bad week, her GP and carers agreed that 24 hour care was needed and it all happened very quickly. I persuaded her to go for 2 weeks 'holiday' being looked after at a 'lovely place' very close to my home. I organised 2 weeks respite with an option to make things permanent. The first couple of days she was very cross with me (I visited briefly each day), then she calmed down. Not once did she mention her flat and seemed to have no recall of it, or the things in it at all.
It was only once she was in the CH that I fully appreciated how bad her dementia had become - she had covered quite well when on her own.

It saddens me to see some of Mum's old friends, still independent and enjoying life in their twilight years, while Mum has lost that. But I have never regretted my decision. Mum is well looked after and safe. In the last 6 months she deteriorated considerably - and I am so grateful that I moved her when I did rather than in a crisis situation.

There comes a time when you have to be strong for the person you love, as much as that may hurt. Sending thoughts and good wishes to you and your Mum.

Thank you so much Toony. I really appreciate your feedback. You are quite right about being lucky that you moved your Mum into a CH before there was a crisis. I actually have never considered that happening although it could happen at any time.

 

[Boboozie]

Thank you so much Toony. I really appreciate your feedback. You are quite right about being lucky that you moved your Mum into a CH before there was a crisis. I actually have never considered that happening although it could happen at any time.

We have a appointment on Thursday to go look at a CH which is only 10 minute walk from where Mum lives now. After that we will hopefully feel a bit optimistic.

 

[DeMartin]

We have a appointment on Thursday to go look at a CH which is only 10 minute walk from where Mum lives now. After that we will hopefully feel a bit optimistic.

Don’t always get an appointment, just drop by, avoid lunch. I’ve never been turned away, and you can see and smell the place. Are the residents occupied, or just sat in front of the tv, are drinks in evidence, are They mostly clean and tidy.

 

[Boboozie]

Don’t always get an appointment, just drop by, avoid lunch. I’ve never been turned away, and you can see and smell the place. Are the residents occupied, or just sat in front of the tv, are drinks in evidence, are They mostly clean and tidy.

Will bear that in mind. Thanks.

 

[DeMartin]

Just noticed typo, are they, meaning residents, not being nasty.
I did a lot of online research, ruled out quite a few, it’s the feel of the place. Just like the three bears, 1 was too clinical, 2 no on suite, 3 perfect.

 

[Toony Oony]

Hi again @Boboozie - @DeMartin is absolutely right about visiting prospective CH's. I visited 4 and the one I chose for Mum stood out far beyond the others .... and it wasn't for cleanliness or other obvious reasons. Trust your instincts, you know what will be important for Mum and where she will be most 'at home'.
I was looking for a sense of ease and calm from both residents and staff (I didn't realise that I was seeking that, until I started my visits) and dignity, especially in the more personal areas of care. Watch how staff interact with residents and be sure to find out what their policy 'further down the line' will be, if the CH does not provide nursing care. Also, don't be afraid to speak to any visiting relatives - I visit Mum frequently and visitors sometimes have a quiet word and ask my opinion of the CH, which I am happy to give. We have all been in the position that you find yourself now.

If the place you are visiting on Thursday fits the bill, let them know. Ask about vacancies, and if you are not quite ready to bite the bullet, get on their waiting list. You will then be ready to press the button, as soon as you think it is appropriate.

I'll be thinking of you on Thursday, fingers X'd it will be a successful visit.

 

[Boboozie]

Hi again @Boboozie - @DeMartin is absolutely right about visiting prospective CH's. I visited 4 and the one I chose for Mum stood out far beyond the others .... and it wasn't for cleanliness or other obvious reasons. Trust your instincts, you know what will be important for Mum and where she will be most 'at home'.
I was looking for a sense of ease and calm from both residents and staff (I didn't realise that I was seeking that, until I started my visits) and dignity, especially in the more personal areas of care. Watch how staff interact with residents and be sure to find out what their policy 'further down the line' will be, if the CH does not provide nursing care. Also, don't be afraid to speak to any visiting relatives - I visit Mum frequently and visitors sometimes have a quiet word and ask my opinion of the CH, which I am happy to give. We have all been in the position that you find yourself now.

If the place you are visiting on Thursday fits the bill, let them know. Ask about vacancies, and if you are not quite ready to bite the bullet, get on their waiting list. You will then be ready to press the button, as soon as you think it is appropriate.

I'll be thinking of you on Thursday, fingers X'd it will be a successful visit.

Thank you Toony. I will definitely have a quiet word to any visitors that are there and look out for the pointers that you have given me. I think that all the Family think that my Mum now needs extra care. The thought of trying to explain to my Mum that she has to move out "for a while" really sickens me. I have no idea how Mum will react to the idea of her having to move out "for a while because the Council have got to do some work on her flat" A complete lie of course. Even that makes me feel very guilty.