The well travelled road.

[Topsy Tiger]

My brother and his wife went to see Mum yesterday afternoon. He reported to me that they were greatly encouraged and had a totally different experience to the one I had. They only stayed half an hour and sat with her on the middle floor (for people in early stages) in the small coffee area. I don’t know if she was in hostess mode or not. They reported that there had been no ill effects from the paracetamol, that she was looking clean and presentable and she had volunteered to them that the people here are nice and she likes having them around her all of the time. The only thing she was constantly critical of was “ they don’t quite know how to do things right here so I have to show them”. There is a rack of hats down there so they had a great time trying on sombreros and fezzes and others.

The senior care assistant on duty said that the reason she had been dishevelled when I saw on Saturday was because she refused to allow them to help her wash and dress but yesterday she had accepted it and had a “full wash” and clean clothes on. I used to have to help her with dressing some mornings so I can only assume she is only just beginning to trust them like she trusted me - small beginnings but a start nonetheless.

The carer also said that the preoccupation with showing them how to do things is a common method for new residents to work out their place in the new environment and it will pass.

Thank you to everyone who commented on the wandering in the corridor. It is a comfort to know.

I had an absolutely appalling day yesterday. Heart pounding, pain in the chest, loss of appetite, limbic system on red alert so tinnitus at full volume, muscles tight and adrenaline flowing yet so down in the dumps that I could hardly move off the sofa to eat or go to the loo (possibly too much information here). Just incredible, insurmountable sadness. Today I have to really get my act together.

So lessons learned: keep visits short, take her somewhere other than her communal lounge to be able to distract her with something new, let her find her own way to fit in, expect ups and downs, realise it will take time for us ALL to make sense of this new reality, trust the carers and stop expecting them to provide the 121 care I provided. I have agreed with my brother to not go in on my own for a while although I may try and go with him on Thursday afternoon (he is going alone on Tuesday) as she seems to react differently to each of us - will she react with positivity as she does with my big brother or with relief that I have come to take her home as she does with her trusted and dedicated carer (me)? I have fingers, eyes and hot buns all crossed that it is the former.

 

[Bikerbeth]

So lessons learned: keep visits short, take her somewhere other than her communal lounge to be able to distract her with something new, let her find her own way to fit in, expect ups and downs, realise it will take time for us ALL to make sense of this new reality, trust the carers and stop expecting them to provide the 121 care I provided. I have agreed with my brother to not go in on my own for a while although I may try and go with him on Thursday afternoon (he is going alone on Tuesday) as she seems to react differently to each of us - will she react with positivity as she does with my big brother or with relief that I have come to take her home as she does with her trusted and dedicated carer (me)? I have fingers, eyes and hot buns all crossed that it is the former.

Thank you for sharing on your post as so many comments you have made felt similar to me. The comments by other have been helpful to but I think your lessons learnt is helpful.
I have not seen Mum for 4 days now as although my Mum agreed to try the care home and brother told Mum he thought it was a good idea I am now the ‘wicked’ daughter who has ‘dumped’ her in a care home. I hope to see her tomorrow with my OH to see if she will talk to me again.

 

[Dimpsy]

Some threads resonate and yours has with me.
It sounds like two steps forward and one tiny step back, I hope you don't feel quite so desolate today, you've got through another day and night, make today a treat-yourself-day and do one thing that will lift your spirits - it's not all about mum!

 

[Topsy Tiger]

Thank you for sharing on your post as so many comments you have made felt similar to me. The comments by other have been helpful to but I think your lessons learnt is helpful.
I have not seen Mum for 4 days now as although my Mum agreed to try the care home and brother told Mum he thought it was a good idea I am now the ‘wicked’ daughter who has ‘dumped’ her in a care home. I hope to see her tomorrow with my OH to see if she will talk to me again.

Oh wow @Bikerbeth that is so tough. It appears that is not uncommon for different people to get different reactions. Mums and sons, eh?

In truth, it was my brother who championed residential care, I would have held out until the New Year at the very least, but he said that there are always reasons to be found not to do something, we should just get on with trying it. He was right I guess but I would have been extremely p***ed off if I had had the reaction that you have had. The CH has said that the intense bond between Mum and me is the problem and it will take time before I stop unwittingly unsettling her. Anyway, after seeing such a difference in her after just three days, on Saturday, I am actually dreading going in again, much like yourself. The irony is, I have to rely on my brother to help with the transition.

I wish you a more successful visit tomorrow, even if it takes a little time for your Mum to move past this phase. Please let us know how it went, if you can bear to. It’s an awful thing we’re going through and to communicate with each other must be helpful and supportive?

 

[Topsy Tiger]

Some threads resonate and yours has with me.
It sounds like two steps forward and one tiny step back, I hope you don't feel quite so desolate today, you've got through another day and night, make today a treat-yourself-day and do one thing that will lift your spirits - it's not all about mum!

Thanks @Dimpsy I have actually had a shower and got dressed today but the bees are still buzzing in my head, the tinnitus is deafening, I feel like I could sleep for a week (never gonna happen) and I look at the housework and leaf-raking that has to be done and inwardly shrug. Intellectually I have been thinking of this life change for sometime, often fervently wishing for it, but now it’s here, it seems so sudden and shocking. Instead of being a relief, I just miss my Mum.

A friend has just called and invited me to go with her and her husband to a Christmas market at Burleigh House on Friday. It’s only 15 miles from here. Depending on visiting arrangements that brother puts in place at the CH, I shall work towards that as the first outing.

I have always thought of myself as a self-sufficient, roughie-toughie, can-do kinda gal. It is a massive shock to find myself so incapacitated by emotional distress, so vulnerable and weak. It is the first time I’ve experienced it for which, at 64 (just!), I guess I should be grateful.

 

[Sarasa]

@Topsy Tiger and @Bikerbeth , my mother was (is) like both of yours and was very unhappy when she'd discovered I'd moved her to a care home. I doubt that there is rarely any ideal time to do it, but you both knew you'd got to the stage where your mums needed more help, and a care home can provide that.
In our case we moved mum as she was getting a danger to herself, my brother was in hospital (still is) and I was going on holiday abroad. The thought of mum being at home for ten days with no one other than very elderly friends to come to her aid if she got in a pickle scared me, hence the move. Although I was the one who chose the home and did all the arranging my mum decided it was all my 'nasty boyfriends' fault. I don't have a boyfriend of any description just a very gentle husband. What was odder mum actually thought said 'boyfriend' was my long dead uncle. Not sure how her brain come up with that. Six months down the line mum still isn't happy and wants to come home with me. I know that if I did that (it's not possible anyway) she'd be equally unhappy. It's the nature of the disease not the fault of where mum is.
Hope your next visit's go well. I find taking mum to the coffee bar area usually works as she doesn't see that as part of the home.

 

[Moggymad]

[QUOTE I have always thought of myself as a self-sufficient, roughie-toughie, can-do kinda gal. It is a massive shock to find myself so incapacitated by emotional distress, so vulnerable and weak. It is the first time I’ve experienced it for which, at 64 (just!), I guess I should be grateful.[/QUOTE]

I guess this is your Achilles Heel, as it is for me & probably many others on here. I frequently experienced that paralysing emotional stress. My sister & I also very often had different experiences when visiting mum making me doubt myself. As the most involved in mums care I may have been too close at times still wanting her to be looked after as she was before. I learn't to accept others taking over my role but still remained vigilant. Being in care was good for mum, it opened up another social world for her that wasn't confined to what I had time to do.
Accept the invitation with your friend & start to reclaim your own social life a little bit. You are doing ok & your mum is too. Best wishes.

 

[jamanda]

I have today joined this forum because of your original post, having had tears in my eyes since I first read it. I look after my elderly mum (nearly 89) who has vascular dementia and you have described precisely what I have to come and also my greatest fear.

I joined to thank you for expressing the thoughts that I am dreading coming to pass, and also the replies from the lovely people who understand.

 

[Topsy Tiger]

I have today joined this forum because of your original post, having had tears in my eyes since I first read it. I look after my elderly mum (nearly 89) who has vascular dementia and you have described precisely what I have to come and also my greatest fear.

I joined to thank you for expressing the thoughts that I am dreading coming to pass, and also the replies from the lovely people who understand.

Bless you, @jamanda. I had been caring for Mum for many years, until it became all-consuming. It is not easy for the head to understand when we have reached the limits of our capacity to provide adequate care for our beloved Mums but eventually it happens. The heart, however, is a very different thing. It may be that I never accept emotionally what we’ve done, no matter what my head is telling me. Or to adjust to no longer having that responsibility. Only time will tell. But, as my thread title acknowledges, this road is well travelled by many brave and compassionate people, some of whom have been kind enough to engage with me during this most difficult of times. I am so pleased that their messages have reached you too.

 

[Dimpsy]

Thanks @Dimpsy I have actually had a shower and got dressed today but the bees are still buzzing in my head, the tinnitus is deafening, I feel like I could sleep for a week (never gonna happen) and I look at the housework and leaf-raking that has to be done and inwardly shrug. Intellectually I have been thinking of this life change for sometime, often fervently wishing for it, but now it’s here, it seems so sudden and shocking. Instead of being a relief, I just miss my Mum.

A friend has just called and invited me to go with her and her husband to a Christmas market at Burleigh House on Friday. It’s only 15 miles from here. Depending on visiting arrangements that brother puts in place at the CH, I shall work towards that as the first outing.

I have always thought of myself as a self-sufficient, roughie-toughie, can-do kinda gal. It is a massive shock to find myself so incapacitated by emotional distress, so vulnerable and weak. It is the first time I’ve experienced it for which, at 64 (just!), I guess I should be grateful.

Something as simple as a shower can really make you feel more human, forget the housework, as sure as eggs is eggs, it will wait for you - unless you have dusting fairies!

It's entirely natural to feel the way you do. I remember when the children were small, looking forward to the rare evening out with so much excitement and anticipation, but when the day came, the thrill was replaced by just missing them.

In fact, I've just twigged what's wrong with you - you've got empty nest syndrome!

We are exactly the same age (just 64), but my emotional crisis came at age 61, the year my lovely dad passed away. Events after his death were so shocking, it was without doubt the worst eighteen months of my life. I found it hard to cope with the stress we were put under and there were days when I felt as if I was outside my body, when I seemed to shut down and it was my autopilot going to work, supporting mum, and dealing with the consequences of an evil family member, with me watching from a distance.

I don't honestly know how OH and I survived those dark days, but we did. Up until then my life had been easy, happy, but having witnessed the depths of depravity that someone sank to changed my outlook considerably.
We are back in the sunshine now, we won't ever forget what mum and us had to live through, but if we don't resume our happy lives and put the incidents behind us, then 'he' has won; he's not worth our tears.

I love a Christmas market, have fun on Friday and buy the most outrageous present for mum - and something special for you - you're worth it!

 

[Topsy Tiger]

After a few days of keeping a low profile, staying in the house, I went with my brother to see Mum this afternoon. When we got there, they were having a quiz but Mum was having a nap in the midst of it. Once she had woken up, she was brought out to a comfortable, quiet area for a chat with us. She looked clean (having had a shower yesterday ) and quite relaxed, but thinner and a little pale. She said she didn’t see much of us but understood we have busy lives (little does she know about the near-catatonic state I’ve been in since I saw her on Saturday). After a pause she said “I haven’t seen Claire at all today” so brother said “That’s Claire there” pointing at me. “Oh of course it is” she said and then 30 seconds later she looked at me and said “I don’t know your name, I’m afraid”. She obviously hasn’t any conversation and other than asking if she’s comfortable, there’s nothing else that can be said as she has no memory of anything at all - “ Did you have a nice lunch today?” Vacant look followed by “I don’t know. Have I had lunch?” After 15 minutes she said she’d like to see what’s happening in the quiz so a carer came to get her as we went toward the lift.

There are still a few things I’m not too happy about, for example, she has one false tooth which was still in her bathroom - she sounds like a lisping child without it. I don’t know why that wasn’t attended to when she got up. But they are a professional set up so I have to let them get on with it, I’m no longer the carer.

She has changed in the week that she’s been there. She’s disappeared a little bit more. Brother says it is impacting him badly, which I don’t doubt, but he keeps telling himself that we are doing the best thing for her. I just can’t shake the feeling that we went too early, I bitterly regret that we didn’t leave it until the New Year. But to say so would make it sound like I am blaming him for pushing it through, which wouldn’t be fair as I admit I thought the preChristmas period might be a good, fun time for her to be introduced to her new environment. All that’s happened is she has let go of some of herself, never to be retrieved, I’ve just lost much more of my Mum, much quicker, than I could ever have imagined. Hindsight is a wonderful thing, they say, but for me it is a painful, gnawing, regretful thing. Too late now, anyway, as I doubt she would recognize the house even if she came back. Doesn’t stop me finding it inconceivable that she will never be here again though.

I shall go back on Saturday on my own and take a few bits and bobs in. I’ll go an hour before lunch as 20 minutes isn’t long enough. Somehow I will defeat this draining sense of having betrayed her, having lost her. It’s early days.

 

[Bikerbeth]

Oh wow @Bikerbeth that is so tough.
I wish you a more successful visit tomorrow, even if it takes a little time for your Mum to move past this phase. Please let us know how it went, if you can bear to. It’s an awful thing we’re going through and to communicate with each other must be helpful and supportive?

Just to let you know the visit was a success in the fact that she wanted to have a hug with me and is talking with me even if it was just to complain how awful everything is.

 

[Bikerbeth]

After a few days of keeping a low profile, staying in the house, I went with my brother to see Mum this afternoon. When we got there, they were having a quiz but Mum was having a nap in the midst of it. Once she had woken up, she was brought out to a comfortable, quiet area for a chat with us. She looked clean (having had a shower yesterday ) and quite relaxed, but thinner and a little pale. She said she didn’t see much of us but understood we have busy lives (little does she know about the near-catatonic state I’ve been in since I saw her on Saturday). After a pause she said “I haven’t seen Claire at all today” so brother said “That’s Claire there” pointing at me. “Oh of course it is” she said and then 30 seconds later she looked at me and said “I don’t know your name, I’m afraid”. She obviously hasn’t any conversation and other than asking if she’s comfortable, there’s nothing else that can be said as she has no memory of anything at all - “ Did you have a nice lunch today?” Vacant look followed by “I don’t know. Have I had lunch?” After 15 minutes she said she’d like to see what’s happening in the quiz so a carer came to get her as we went toward the lift.

There are still a few things I’m not too happy about, for example, she has one false tooth which was still in her bathroom - she sounds like a lisping child without it. I don’t know why that wasn’t attended to when she got up. But they are a professional set up so I have to let them get on with it, I’m no longer the carer.

She has changed in the week that she’s been there. She’s disappeared a little bit more. Brother says it is impacting him badly, which I don’t doubt, but he keeps telling himself that we are doing the best thing for her. I just can’t shake the feeling that we went too early, I bitterly regret that we didn’t leave it until the New Year. But to say so would make it sound like I am blaming him for pushing it through, which wouldn’t be fair as I admit I thought the preChristmas period might be a good, fun time for her to be introduced to her new environment. All that’s happened is she has let go of some of herself, never to be retrieved, I’ve just lost much more of my Mum, much quicker, than I could ever have imagined. Hindsight is a wonderful thing, they say, but for me it is a painful, gnawing, regretful thing. Too late now, anyway, as I doubt she would recognize the house even if she came back. Doesn’t stop me finding it inconceivable that she will never be here again though.

I shall go back on Saturday on my own and take a few bits and bobs in. I’ll go an hour before lunch as 20 minutes isn’t long enough. Somehow I will defeat this draining sense of having betrayed her, having lost her. It’s early days.

I feel so much of what you are saying. I too feel that Mum has disappeared more in the last 2 weeks since she went into the home. It has certainly taken me by surprise. There are people far better with words on this site but I just wanted you to know you are not alone. Hindsight is a wonderful thing but I also think there would never be a good time to place a loved PWD into a home. I hope you have a good visit on Saturday

 

[Topsy Tiger]

@Bikerbeth It’s a shock isn’t it Beth? We were warned by all the professionals that she would degrade when put into a CH but I’d seen some threads in which the PWD rallied and thrived in care and I hoped that that would be the case. Not so Mum it would seem. She has become slightly incontinent and wanders the corridors at night, neither thing I would have anticipated although I guess incontinence would have happened here given time.

I’m very glad to hear that things went better with your last visit. I felt sick going in today, so goodness only knows how you must have felt. Anyway, I do hope things improve for your Mum and you get to spend some quality time with her soon. All the best.

 

[Bikerbeth]

@Bikerbeth It’s a shock isn’t it Beth? We were warned by all the professionals that she would degrade when put into a CH but I’d seen some threads in which the PWD rallied and thrived in care and I hoped that that would be the case. Not so Mum it would seem. .

I too had heard the same but Mum was so lonely at home and had forgotten how to use telephone and telly I thought she would thrive in the company but I sometimes feel she is withdrawing more.
I too had the conversation the other day when she asked me where I was and was I coming to visit her soon. I just said yes she is on her way

 

[Vitesse]

@Bikerbeth It’s a shock isn’t it Beth? We were warned by all the professionals that she would degrade when put into a CH but I’d seen some threads in which the PWD rallied and thrived in care and I hoped that that would be the case. Not so Mum it would seem. She has become slightly incontinent and wanders the corridors at night, neither thing I would have anticipated although I guess incontinence would have happened here given time.

I’m very glad to hear that things went better with your last visit. I felt sick going in today, so goodness only knows how you must have felt. Anyway, I do hope things improve for your Mum and you get to spend some quality time with her soon. All the best.

I have just read the whole of your thread, and I am holding back the tears. You are obviously a very caring daughter and you should be proud of what you have accomplished. You have given me a huge amount to think about. My husband has AD and was diagnosed in late 2016. I am his sole carer and I find myself bemoaning my lot rather more these days. His AD is severe, he is deaf, cannot communicate and I find life difficult, to say the least. The mental health team and social worker keep telling me I should have him go to respite care, and even mention long term care. I am resisting strongly, but have been starting to think it may be a good idea. Your thread has made me reconsider. It seems like you are articulating all my worst fears of a CH, and I think I must battle on as long as humanly possible!

 

[Lirene]

Some care homes do care. My mum has been in for 11 years so you will appreciate the deterioration we have seen! She’s now 96, is 99% bed bound and has no idea who we are. When she went into the care home I didn’t give her 6 months - against all odds - she thrived and loved it and they certainly love her back xx

 

[Bikerbeth]

I have just read the whole of your thread, and I am holding back the tears. You are obviously a very caring daughter and you should be proud of what you have accomplished. You have given me a huge amount to think about. My husband has AD and was diagnosed in late 2016. I am his sole carer and I find myself bemoaning my lot rather more these days. His AD is severe, he is deaf, cannot communicate and I find life difficult, to say the least. The mental health team and social worker keep telling me I should have him go to respite care, and even mention long term care. I am resisting strongly, but have been starting to think it may be a good idea. Your thread has made me reconsider. It seems like you are articulating all my worst fears of a CH, and I think I must battle on as long as humanly possible!

@Topsy Tiger obviously has a different story to mine. For my part as a long distance carer travelling up to see Mum several times a week and numerous daily phone calls despite what I have posted above I do not regret the decision to move Mum. She was desperately lonely and in my view unsafe to be left alone in her house eg tripping electrics and leaving doors open and unlocked. With my Mum there was also the death of her sister just before she went into the CH so this would have impacted too. There are also many posts on this forum where people thrive in a CH. so please do not discount at least the consideration of respite for a short period.

 

[Topsy Tiger]

I have just read the whole of your thread, and I am holding back the tears. You are obviously a very caring daughter and you should be proud of what you have accomplished. You have given me a huge amount to think about. My husband has AD and was diagnosed in late 2016. I am his sole carer and I find myself bemoaning my lot rather more these days. His AD is severe, he is deaf, cannot communicate and I find life difficult, to say the least. The mental health team and social worker keep telling me I should have him go to respite care, and even mention long term care. I am resisting strongly, but have been starting to think it may be a good idea. Your thread has made me reconsider. It seems like you are articulating all my worst fears of a CH, and I think I must battle on as long as humanly possible!

Hi @Vitesse , it isn’t the care home itself that is the problem actually. The CH is the top-rated dementia home in the area, is very comfortable and there is a good amount of staff, all long serving and professional. Mum is self-funding so we are lucky enough to get the choice of where she went and when. They take a week to get to know her before finalizing the care plan so any teething problems will be sorted as they arise.

I have always been extremely close to my mother, giving up work and home some years ago to move in with her to, initially support her, which morphed into full blown care over the years. It is a complex set of emotions to contend with when the PWD you care for goes into residential care. I am not dealing with it very well. I started the thread to document the experience of the transition in a place where it seemed relevant.

Please don’t take my experience as a template for everyone - lots of TP contributors have got only positive stories to tell about CH. If you are being recommended to have respite care you should take it. It is for a limited time only and will allow you to a) test your husband’s response to professional care b) give you a much needed break to get your strength back and c) give you an insight into what life would be like for you going forward should your husband finally go into permanent residential care.

We all do what we can for as long as we can. If you chose the right CH, you could be opening the door to a much richer life for both you and your husband. Please don’t be frightened to explore it because of something I’ve written, that would make me feel terrible.

Good luck to you.

 

[Dimpsy]

I have just read the whole of your thread, and I am holding back the tears. You are obviously a very caring daughter and you should be proud of what you have accomplished. You have given me a huge amount to think about. My husband has AD and was diagnosed in late 2016. I am his sole carer and I find myself bemoaning my lot rather more these days. His AD is severe, he is deaf, cannot communicate and I find life difficult, to say the least. The mental health team and social worker keep telling me I should have him go to respite care, and even mention long term care. I am resisting strongly, but have been starting to think it may be a good idea. Your thread has made me reconsider. It seems like you are articulating all my worst fears of a CH, and I think I must battle on as long as humanly possible!

I think @Bikerbeth is right, care provided by anyone other than us who love our pwd's is not easy to think about.
It isn't inevitable that short respite breaks lead to permanent residential care, that is a scary thought indeed, but it does offer you time to recharge your batteries and opens your mind to what is available should you and your husband need it.