Looking into care home placement - feel like Judas

[Teanosugar]

Good luck

I haven't posted for a while, one reason happy one not so. I have been very busy with preparations for my daughter's wedding which culminated in a lovely memorable day last Sunday.

Needless to say Mum was a bit confused with the disruption in the house. I did all the decorations for the event at home & made the cakes (there were 3), on top of this she developed a UTI 3 days before the wedding.

Even allowing for all the changes and resulting upset for her, she has moved further down the Dementia path & I am finding I am extremely wearied in coping with caring for her. I am lucky compared to some here in that there is no physical threats involved, but I am finding the non-stop emotional strain and the lack of sleep draining.

On top of this my daughter is pregnant & has a condition which could potentially prove life threatening for her or her unborn son or both. As my 1st and very likely only grandchild I would love to be there for her, and she wants me there very much. However my Mum will need to go into respite care. The local CH does not facilitate EMI respite which she needs as she will wander. They may however have a permanent bed in the not too distant future, which they are happy to earmark for her. However this brings forward a decision I have been considering for some time, about placing Mum in a Care Home permanently. This CH is within walking distance so I could visit everyday, take her for walks in her wheelchair, take to medical appointments and just be nearby. I know I would be able to get some rest & enjoy my visits with her etc.

However I can't shrug off this feeling like a Judas knowing that I am planning this without her knowledge. I am trying to make decisions that are in her best interests with a clear head, but my emotions are holding me back from taking that final step.

I know ultimately the decision is mine I have LPA for both health & finances in place & perhaps if the issue of my daughter's health had not arisen I may have been able to continue to care for Mum at home for a little while longer. If I am honest with myself though I don't think I would be able to do so indefinitely, I am managing her care but at a cost to my own health. I am feeling isolated & lonely & unable to leave her alone for more than 20 minutes at a time to walk my little dog. Pretty soon I think this will have to stop too.

Gosh this is a long one sorry! Just read it back & it looks as if I am trying to convince myself!

Good luck with the future, it is the right decision as things just get worse and then you have to make a decision during a crisis like I did. It is much better that you are able to make plans without the added stress of being in a crisis. Unfortunately sometimes it takes a crisis to make that decision, or get the professionals to support you and make it possible. Please do not doubt that you are doing what is best for all and do not let those who will criticise your decisions (there are always those who do) make any difference to what you know is right. People need to walk a lot of miles in the shoes of a person with care for a dementia sufferer and while some just struggle on, some of us just can't any more without detriment to our health and our families. My dad went into a CH 2 years ago, looking back I do not know how I coped as long as I did, I had all those self doubts, beat myself up about him going into care but it was best for us all. I could not give 24/7 care, he needed that, therefore a crisis happened. You will look back and feel relief as the pressure will be off, therefore you can spend quality time with your loved ones, all of them. We are but one person, we are not super human though there are those who expect us to be, who will let us carry on caring, with no thought to the effect it has on ourselves, our families and the risk to the loved one with dementia. Please stop beating yourself up, you have done your very best, now it is time to move on and enjoy the time you have left with your loved one. Good luck again, it is a hard road we travel with many obstacles. x

 

[Merrymaid]

Thanks Teanosugar, for your kind words of support. I have just come back from a walk in the sunshine with Mum in her wheelchair. On impulse I called in to the CH that she will be going in to very soon. they were so welcoming & friendly. I know it may be different when she first has to stay there, but it was reassuring to see how content the residents were and their reaction to my unplanned visit was heartening. We have also had an invite to an afternoon tea event next week! I left feeling much more positive about the prospect of her imminent move.

 

[Isabella]

My mum has been in a care home for three months now. She is clean, fed and safe. She has far more dignity now and I know when the phone rings it won't be the police or A&E telling me they have a lady with them they think might be my mother! I have never told my mum that it is a care home (who knows if she realises or not) and never mention her old home. This seems to work as she's never questioned why she's there or what's happened to her house and belongings.

I will never feel bad about moving her, I know that I did everything I could to look after her. It just isn't possible to take this disease on 24 hours a day and still keep your own health and sanity. It is the disease we should hate not ourselves. Please never feel guilty, you have coped with far more than most people could begin to imagine in their worst nightmares. You have done the right thing and I wish you the best of luck with the move.

 

[Merrymaid]

My mum has been in a care home for three months now. She is clean, fed and safe. She has far more dignity now and I know when the phone rings it won't be the police or A&E telling me they have a lady with them they think might be my mother! I have never told my mum that it is a care home (who knows if she realises or not) and never mention her old home. This seems to work as she's never questioned why she's there or what's happened to her house and belongings.

I will never feel bad about moving her, I know that I did everything I could to look after her. It just isn't possible to take this disease on 24 hours a day and still keep your own health and sanity. It is the disease we should hate not ourselves. Please never feel guilty, you have coped with far more than most people could begin to imagine in their worst nightmares. You have done the right thing and I wish you the best of luck with the move.

Thankyou so much for your kind words

 

[Maddcow]

Similar situation

I'm in a very similar situation, with my mum deteriorating rapidly 150 miles way and 1st grandchild expected 20 miles away....desperate to be there for my daughter, but also want to do right thing for Mother; the time is approaching to find a CH near me for Mother -just have to convince my sister but I agree that you must be there for the new life rather than the old.....my mother put her own mum in a CH so that she could look after me when I had my second child and so I know she would want me to do the same. Follow your instinct and best of luck

 

[Merrymaid]

I'm in a very similar situation, with my mum deteriorating rapidly 150 miles way and 1st grandchild expected 20 miles away....desperate to be there for my daughter, but also want to do right thing for Mother; the time is approaching to find a CH near me for Mother -just have to convince my sister but I agree that you must be there for the new life rather than the old.....my mother put her own mum in a CH so that she could look after me when I had my second child and so I know she would want me to do the same. Follow your instinct and best of luck

Thanks so much for your reply. I hope you too can find a suitable care home for your Mum soon. Good luck to you too!

 

[Jacky8675]

It's comforting to know that you are not on your own

Hello. It's been only 5 weeks now since I had to put mum into residential care so I know how you are feeling. I felt I had let her down because I couldn't provide the level of care that she needed. I always thought that I would care for her until the end. However she is less agitated than she was, she is well cared for & I can go and see her anytime I like. She seems to have found a peace in her that I haven't seen for many years so all in all it has been the best thing for her. All that said I find it very difficult when I have to say goodbye, it's heartbreaking and I only hope that it will get easier with time. Does it? Even though I get to spend more time with my own family I still feel guilty. She is never far from my thoughts.

 

[Merrymaid]

Thanks for sharing Jacky, it is really good to know that your Mum has settled so well, & I hope that eventually you will enjoy the same peace you have sought & found for your Mum. I am hoping for a similar experience for my Mum too.

 

[san54]

Hi All, I am new to this forum but felt I needed to reply to your dilemma as I am in the same boat and don't know what to do. Mum lives with me and was diagnosed 6 months ago with Vascular dementia. she has had dementia though for a long time possibly 2 years before diagnosis. she has been given new medication from specialist Donepizil yesterday and this morning has had several accidents regarding toileting including No 2's. Not distressed at all although her room was very bad when I found it this morning. I myself have a muscle condition called Fibrmyalgia which gives me a lot of pain so I found it exhausting today as had bed to change carpet to clean and bathroom. I feel really awful for thinking the same as you - that this cannot continue as I am emotionally and physically exhausted. I am thinking of looking at some CH but my children have already told me that they would have nothing to do with me if I ever put mum in a home. Now I am torn what to do. I don't want to lose my family over this but im so low and tired I need to do something soon. Sending you all hugs

 

[Fhvn]

Same here....my husband is in hospital ATM, and his mental state has deteriorated very recently. In hospital he is clean, fed, relaxed. He doesn't recognise he's in hospital and doesn't seem too bothered, except when I visit and then he wants to go home. At home I cannot get him to wash and he is agitated most of the time. He knows who I am, but doesn't think we are married and doesn't know where he is. He doesn't recognise our house and asks to go home. I wonder if having him back home is the best thing for him or would he be happier in a CH? How do you know when the time is right?

 

[Merrymaid]

Hi All, I am new to this forum but felt I needed to reply to your dilemma as I am in the same boat and don't know what to do. Mum lives with me and was diagnosed 6 months ago with Vascular dementia. she has had dementia though for a long time possibly 2 years before diagnosis. she has been given new medication from specialist Donepizil yesterday and this morning has had several accidents regarding toileting including No 2's. Not distressed at all although her room was very bad when I found it this morning. I myself have a muscle condition called Fibrmyalgia which gives me a lot of pain so I found it exhausting today as had bed to change carpet to clean and bathroom. I feel really awful for thinking the same as you - that this cannot continue as I am emotionally and physically exhausted. I am thinking of looking at some CH but my children have already told me that they would have nothing to do with me if I ever put mum in a home. Now I am torn what to do. I don't want to lose my family over this but im so low and tired I need to do something soon. Sending you all hugs

Oh dear san54 it's a shame your children have taken this stance regarding a care home. Are they directly involved in your Mum's care? Are they fully aware how difficult it is for you to be responsible for her with your own health issues? Maybe if they could understand these challenges they could appreciate how you can still be involved in your Mum's care, without wearing yourself down into the bargain, by her being in a CH. You can enjoy the time you have with her knowing all her everyday needs are being met by trained people. Here's hoping they can be open to other care solutions. Good luck

 

[Merrymaid]

Same here....my husband is in hospital ATM, and his mental state has deteriorated very recently. In hospital he is clean, fed, relaxed. He doesn't recognise he's in hospital and doesn't seem too bothered, except when I visit and then he wants to go home. At home I cannot get him to wash and he is agitated most of the time. He knows who I am, but doesn't think we are married and doesn't know where he is. He doesn't recognise our house and asks to go home. I wonder if having him back home is the best thing for him or would he be happier in a CH? How do you know when the time is right?

Hi Fhvn reading your post it looks like you have answered your question yourself. If he is being unresponsive to your caring it is probably best that his needs are taken care of by a CH, leaving you free to concentrate on trying to enjoy any quality time you can with him. Best wishes

 

[Pickles53]

Oh dear san54 it's a shame your children have taken this stance regarding a care home. Are they directly involved in your Mum's care? Are they fully aware how difficult it is for you to be responsible for her with your own health issues? Maybe if they could understand these challenges they could appreciate how you can still be involved in your Mum's care, without wearing yourself down into the bargain, by her being in a CH. You can enjoy the time you have with her knowing all her everyday needs are being met by trained people. Here's hoping they can be open to other care solutions. Good luck

I think the question for your children is what are they prepared to do and how much of their time are they willing to devote to your mum's care. If the answer is that they are not able to offer the support you need, I'm don't think they are entitled to veto your decision.

 

[Merrymaid]

Update on Mum's move

I have been dropping in at the CH with Mum & having cuppas & chats. Hoping that some sense of familiarity grows for Mum. Yesterday was a singalong day with Ivor the Crooner. I deliberately sat behind her wheelchair knowing she would forget I was there. She relaxed & tried to join in with the singing, tapping her hands and feet in time with the music. It was reassuring to watch.

While Mum was attending day care today I had the SW & Care Home manager call to see me re paperwork & to gather information on Mum's needs for when she relocates on Monday. The manager is going above & beyond to make her welcome, we are even going to pick out some new wallpaper for her room! I can't stop pinching myself I feel we are so lucky. I know we still have some rocky patches ahead but it's comforting to know that everything that can be done to make the transition smooth is being put in place. Fingers crossed for Monday!

 

[Tufty]

I think the question for your children is what are they prepared to do and how much of their time are they willing to devote to your mum's care. If the answer is that they are not able to offer the support you need, I'm don't think they are entitled to veto your decision.

Absolutely! I couldn't agree more.

Tufty

 

[Merrymaid]

Mum's in place

Dropped Mum off this morning at CH. Trying to treat it like she was off to Day Care. She knew something different though as she asked, 'Your not going to leave me here are you?'. just replied, 'Yes for now. You have been before and they are very nice aren't they.'

Staff settled her with other residents while I took some of her belongings into her new room. I had a quick word with her & then said would see her later, my usual parting. I then came home & crumbled. My little dog gave me cuddles. Then pulled myself together and continued with labeling & packing I couldn't do while she was here. I will be going back later to take her for her usual walk in the wheelchair while the staff unpack her clothes. Really wish there was someone to talk to right now

 

[onlyme247]

You are understandably feeling so awful now.Sorry I can't say anything that will take your pain away just now.You are doing what is needed for your MUM and your family.Bless you maybe walk that little dog of yours to get some air.So many others know how you are and will be there for you soon.

 

[HelenInBC]

she has been given new medication from specialist Donepizil yesterday and this morning has had several accidents regarding toileting including No 2's.

I wanted to reply to this to tell you that my mother had terrible problems with incontience and diarrhea when she was on donepezil (aricept) I finally figured out what was causing it and switched over to Exelon (mementine) patches and it got much better.

 

[HelenInBC]

I am finding the non-stop emotional strain and the lack of sleep draining....

Merrymaid, I can so relate to your dilemma. I've struggled with the idea of a care home for my mother for the past couple of years. We even tried it once last January and it was a complete failure. In our case, I think neither my mom or my siblings and I were ready and it was the wrong place. We were kind of pressured into accepting a placement on short notice.
Fast forward 8 months and my mother's condition had declined to the point where we felt we could no longer provide her with enough attention, distraction and care at home that she needed. 2 weeks ago, she moved into a place of our choosing, close to where I live and appropriate for providing for her needs.
What a difference there has been in my mom in just 2 short weeks! She seems so much more content. She is keeping much cleaner, accepting care that she refused from my daughter who was doing her best at home for her. She's eating and socializing. Her stress level seems so much lower! I think it's partly due to having a simpler environment and less to worry about. Her days are guided, rather than her wandering around looking for ...? something??
It's such a joy to visit her and see her light up when she sees us coming. She loves us visiting but is happy to stay when we leave. It has gone so much better than I expected. I hope the same happens for you.
I'm just so relieved to have the decision behind me now.

 

[Merrymaid]

Thanks Onlyme247 I did take Baz out for a walk in the sunshine & it did help me mull things over and get some perspective. I have been back & taken Mum out for her afternoon stroll in her wheelchair. She was happy to be with me but did not make a fuss over going back to the CH. Apparently her and another resident, who is at approximately the same level, have began, what could be, a great friendship.

She ate her lunch and was looking forward to tea when I left her again.

I do hope that I can see positive results like HelenInBC did in a relatively short time.

I am not back again until tomorrow now, so I think I will go for an early night as did not get any sleep at all last night.