The well travelled road.

[Whisperer]

Dear Topsey Tiger.
Another day on and hopefully your mum has settled? Reading threads like this tells me two things.
1) There are many decent people out there we never meet. The Internet forums like this one is lifting a small part of the feeling of loneliness caring can induce. Kindness extended from strangers, who have some understanding of the emotional roller coaster of the caring role. Your mum is still with you but in a very true sense you are feeling grief. As you say you have lost the full time caring role that has shaped your life so profoundly in recent times. Additionally you sit in your mum’s home and grieve her absence, noticing the way for many years she was spiritually that home. The warm welcome, her voice, her sense of just being there. Truly I hope she settles in the care home. Allow yourself the time to grieve these losses, it is part of the healing process. To feel loss at their passing emphasises they were special, important, worth having in your own memory store.
2) Our memories are what make us individuals, they mark out our passage through the years. Dementia cruelly takes them away from the sufferer, which makes it all the harder for anyone caring for them. Until my mum started her Dementia road I had not really thought about the role of memory in personal identity. Please do not regard my next comment as flippant or lacking understanding of your pain. Someone else mentioned holding onto 1% of common sense. Well here is another thought. You will continue your journey through life. Looking back on these days will no doubt always be painful. Hard as it is to believe additional memories will be made in the future. Your ultimate return to a London home, hobbies and interests rekindled, new friends as yet unmet and perhaps old ones refound. You have done so much. The future is still out there and as you pass into it so memories are laid down. In these sad and dark moments please hold onto that thought. You in a future as yet unmapped. I hope it proves to be a good one, I am sure your mother would hope with all her heart for the same thing.

Hope the above helps. One day I no doubt will face similar dark moments. What you have honestly relayed has helped prepare me a little and for that I am grateful. One wonderful thing about this forum. Members do not meet, but they openly and honestly reach out to each other. Just knowing you are not alone is a powerful comfort to us all. I hope my words are some comfort to you. Best wishes for that future.

 

[Topsy Tiger]

Thank you for your thoughtful, kind and wise words @Whisperer.

Shared experience is a potent force for good and I am very grateful to everyone who has taken the time to connect with me on TP, particularly when many have had far worse situations than mine to contend with.

On a practical note, yesterday started with Mum threatening to walk the four miles back if she wasn’t taken home immediately. She is five feet nothing and seven stones, a little dot, usually quiet and compliant but she has spirit and determination which I’ve always admired and which seemingly hasn’t been dimmed by the condition, at least not by much. My brother had to go into the CH yesterday afternoon for admin purposes and they encouraged him to see her for a while. He reported back that she seemed much calmer, didn’t ask to be taken home, had had fun playing carpet bowls in the morning and seemed engaged in a little quiz that was going on. He took her back to the lounge where supper was being offered and she joined some other ladies at a table. He sneaked off at that point although said that he doesn’t think he’ll ever feel comfortable doing that.

So not asking him to take her home is something I suppose. Two other things got reported back to me though.

One is that she did not have her hearing aids in for the duration of his visit. Without them Mum is very deaf indeed. She can’t see because of MD and now she can’t hear so sensory deprivation is a real issue. My brother is more complacent than me so, after a scout around her room without finding them, he mentioned it to one of the carers who hadn’t noticed but said she would have a look around. Now, this has left me very cross. Apparently she got herself up in the morning so I’m not sure whether she would remember to put them in if she was left to her own devices (I certainly used to have to get her to pinch her thumb and forefinger together when handing her the aid and tap which ear it should go in) - if so WHY was she left to her own devices? Every evening at bedtime I would take her hearing aids from her and put them in a very particular place that she became accustomed to, now she has to learn a new routine overnight - are they helping her with that? Brother couldn’t answer. It’s possible that she had them in initially then took them out during the day and forgot where she put them and equally possible that another resident picked them up. In which case it’s unlikely that we’ll ever find them. I shall ask about this situation when I’m called mid morning with a status report. What I do know is, had she been here, I would have moved heaven and earth to resolve the situation by finding those hearing aids.

Secondly, my brother announced that the CH was “worried about” me. They know that I have been less than enthusiastic about Mum going into care, indeed I blocked it over the summer and am glad I did as it gave her one final opportunity to enjoy her beloved conservatory. It transpires however that they’re not actually worried about me per se but are worried that I may not be as positive with Mum as I need to be when I go to visit. This is completely unfair as it was I who did all of the preparation for her entry into the CH and on Wednesday I was the one chatting happily with Mum and the other ladies whilst brother was absent either with admin or work calls until the point came when she realised she was being left in a care home and we were told to leave and not look back.

The two things collide today because I, being the principal carer and problem-solver-in-chief, actually have a spare pair of hearing aids which I could take in. Brother has suggested, presumably at the CH request, that I give it another day before visiting so I shall see what they say when they ring. If they tell me not to come even though I could improve her situation by bringing in hearing aids, then I know we have a problem.

Now it does sound, rereading this post that they may have a point. I don’t sound particularly positive about the situation. Well allowing her to lose her hearing aids on day one will do that for you. But actually I know full well that Mum coming back will be an impossibility. We’ve taken the decision and must see it through, to do otherwise would be highly detrimental to her cognitive state. Hearing that they have a video of her laughing when playing carpet bowls tells me she is having some fun, something with the best will in the world I cannot claim to have provided for a while. It is so early in the process, however, that obviously I am going to be finding it hard and I would hope that the CH would cut me a bit of slack on that.

A switch was flicked on Wednesday and I don’t feel like I belong here any more. In the New Year I will make arrangements to return home to London. I fear that I will feel even further removed from Mum when that happens but realistically she is going to be institutionalized soon, they will become her ‘family’ and this time next year she probably won’t really know who I am anyway. I expect the way I feel will get better as time goes on. Friends, many of whom I’ve only been able to keep in contact with by WhatsApp for a few years, have been fantastically supportive this week, so gradually getting a social life back will be a great help.

I have to learn to let go.

Apologies for long post.

 

[Dimpsy]

We both know that NO-ONE can care for our mum's the way we do, we know their likes and dislikes, have set routines (without fail, every evening my mum puts her hearing aids into a little green dish and I put them in the next morning for her). It will take time for the staff to establish your mums preferences, but give them a chance, it will happen.

It's unfortunate about the aids but try not to get upset., mum is living in a community now, so the rough will come but so will the smooth. Early days and you will adapt, just like mum.
Did you know she was a keen bowls player? Thought not!

 

[Palerider]

Thank you for this @Palerider. I knew the poem a long time ago and rereading it now through the prism of dementia is very emotional. Funnily enough, I always fancifully characterised our journey in my own mind as going “into the West”. Such a comforting concept.

Yes going 'into the West' is very fitting for this journey.

Just caught up on your thread. Its very difficult to know how things will be as change comes. I expected my mother to object to being in a CH, but she took to it easier than I thought, but it hasn't been without its problems. Even in the mist of dementia she has been wanting to 'go home' as she sundowns and is constantly keen to go out for a drive or walk. I am lucky I guess in that she has not yet taken that frustration out on me when I visit, but I take each visit as it comes and prepare myself for the 'just in case' scenario if it arises.

The CH did keep on loosing mums spectacles for a few days and one day I arrived to find her wearing pink ones which were awful in shape. Her spectacles were found and now as the CH staff have got to know her the problem has stopped -well mostly. -though there seems to be some difficulty in reading name labels....but I guess in the chaos and lack of permanent staff the care workers do their best, and most importantly they are kind to the residents. I guess hearing aids are a different venture though but like glasses important for sensory perception.

Its interesting when I watched mum from a distance, not knowing I was there in the CH she was very different and just getting on with her day as best she knew how to -an observation that teaches valuable insight when we are not present in their world. Its worth trying this approach ifyou can as its an eye opener.

Yes we have to let go of what has gone before, time itself pushes us forward with the flow and ebb of life itself, I tend to see it more as moving on than letting go, although some days I can't decide on either of the two, I just know for now there is a gap in my life which an old friend used to fill

 

[Topsy Tiger]

I visited yesterday for the first time. It was actually quite shocking. When I arrived Mum was wandering about in the communal lounge holding someone else’s jumper like a cuddly toy. When she saw me she instantly recognized me (remember she has MD) and came running up, grasped me into a hug and said “Bless your heart, you’ve come to take me home!”. Luckily there was a communal sing song going on around the TV so, as a distraction, I encouraged her to join in and for an hour she and I sat and tried to join in with WW1 and music hall songs, Danny Boy and sea shanties despite the fact that she kept bemoaning that she used to know the words but can’t remember them any more. Once this had finished and the execrable film Bruce Almighty had replaced it, we moved away. Her hair was scruffy, she had on a jumper that showed a lot of vest and her trousers had a large grease stain on them (which I accept could have happened at lunch time that day). She continually mumbled a stream of unconnected and meaningless sentences and whilst she was in the loo, I went to her room to find, at the bottom of the wardrobe, her slippers, two tee shirts and a hairbrush bundled into a jumper which had the roll-neck and sleeves tied together in a bundle. It looked like it should be in a red and white spotted hankie on the end of a stick. When I got back to the lounge she was telling an infirm woman that she was saving the seat for someone else (me) and sending her off. I managed to retrieve that situation following which, after almost two hours, I made it to the lift and disappeared despite the fact that each time I moved she said desperately “ you will come back, won’t you?”. Outside it was almost dark, miserable and pelting with rain. I’ve heard the term ‘pathetic fallacy’ in which the environment and elements reflect the inner condition of the main protagonist in literature. Well, now I know what that feels like.

HOW can she have changed so much in 72 hours? On Monday evening we were watching University Challenge together and despite the fact that she (make that, we) couldn’t understand the questions, she was leaning forward towards the TV saying “come on, get on with it!” and wouldn’t go to bed until it was over. The next day, she was waving out of the window as her companion left on her scooter after coffee, smiling but under her breath cheekily saying “ok, that’s enough, go on now” as Vic waved back furiously for over a minute. She could get herself up, make a cup of tea and articulate how she was feeling. How did she become this disheveled, distracted, broken creature in so short a time?

I agreed to this because I thought having company 24/7 would help her anxiety and actually being with others who share the same condition would make her feel less self-conscious about it. We were warned by all of the professionals that her cognitive state would deteriorate if she went into care but I didn’t expect this in just three days. Several of her cohabitatants spent the entire time I was there - so I suppose it happens continuously - asking when they were going home, never sitting down just wandering up and down the corridors and trying to get into the lift with guests or staff. I dread that Mum will become one of those poor tortured souls rather than eventually accepting her situation and settling. I asked my brother yesterday when I got back “have we done the right thing?”. His reply, “we’ve got to see it through”. I don’t think I will ever stop feeling guilty for doing this to her - accelerating her decline.

I was told on Thursday and again on Friday by the CH that my presence would most likely unsettle Mum as she continually asks for me. I’m now beginning to think it is better not to go, at least for a while, as the experience is ultimately negative for both of us. I used to be a rational lawyer, now I’m just a bundle of visceral emotions. I hope both Mum and I settle quickly but I can’t help wishing we’d never taken this step.

 

[Rosalind297]

Oh dear. My heart goes out to you.

I won’t patronise you by saying it’s early days or these feelings are quite common. You are suffering and I respect that you can only compare how you are feeling now with how you did when you were principal carer, not comparing how you feel with how others feel.

You will have to find your own way through this, with the help of the professionals and your family. There are no real insights I can give you into how to do that but I think that, to start the process, you have to allow yourself to feel the way that you do at the moment. Acknowledge the sadness, explore exactly what your emotions are and then you will know what you have to do to tackle them.

I hope that, as you say, both of you settle into the new way of life as soon as possible.

 

[Dimpsy]

It's no wonder your emotions are all over the place, reading your experience has distressed me greatly as I have pictured my mum and me in this situation further down the line, it sounds like Bedlam.
(If you want some help digging an escape tunnel I'll bring the spade).

I wish I could provide soothing words to calm your inner turmoil; my previous message was to give you strength to get through the first day; I'm out of my depth now, but many others have trod the path before and will guide you through the settling in process. I will read their replies with interest, not least to find out how you can achieve inner peace having witnessed the downturn in your mum's behaviour after such a short time.
All I can suggest is perhaps temporarily mentally detach yourself, tread water and lean on and listen to your brother.
Visit mum and make a note of what's going on in the CH, the good and the bad service plus any decline or improvement in mum.
If you can stay neutral for a bit, it will give you clear eyes to see if a change of home may be appropriate, maybe because you can see the standards of care aren't what you expected or a smaller home (if it's a large CH) could suit better.
Any pre-conceptions you had have now been replaced by reality, so your decision making must move on a pace as well. Mum has made the transition and you've seen the initial results (which will surely change the longer mum is there).
If you can re-set your sight's then you will be in a position to decide whether the living arrangements that are in place now are acceptable to mum and you.
xx

 

[Grannie G]

Hello @Topsy Tiger

Your visit sounds shocking and if I try to put myself in your position I know how I would feel.

I can only make a couple of points which might reassure you.

Firstly, it was a weekend visit. Is it possible the home had agency staff in who would only apply the most basic of care, not being familiar with the residents?

Secondly, perhaps as little interference as possible is hopefully allowing your mother to settle.

Even so, this does not excuse stained clothing and such an unkempt appearance.

I wouldn`t worry too much about the bundle of clothes at the bottom of the wardrobe. My husband was always bundling his clothes to pack to `go home` even when he was at home with me.

If you continue to visit as a fly on the wall, just to observe your mother`s state, it might help, but if your mother`s appearance and demeanour doesn`t improve I would seriously question the standard of care.

 

[Palerider]

I'm sorry for you and your mum. It is a shock to see and I have to be honest I have gone through a similar thing in the last two weeks, which brings back those whirring thoughts of doubt about the whole thing. But I know if mum stayed at home eventually she would decline to the same status, in fact she was beginning to spiral at home if I'm honest.

I have spoken politely but firmly to the senior carer on duty a few times about things and find its best not to hold back, what may be acceptable to them might not be acceptable to you or your mum. The problem is that alot of what happens is because of the dementia, so filtering out things that should be done becomes more difficult because the pwd may not allow it. It becomes a scenario of judgement calls what to pick up on and what to let go -compromise I guess.

Its hard and this is your first week, I don't have anything else to say, but I hope you do find a way of coping with this and if in a few weeks time the CH doesn't seem to be meeting your mums care needs then maybe a change of CH. I haven't decided yet on mums CH, but I know it will never be the same care she got at home with me.

 

[Bunpoots]

I agree with @Grannie G and @Palerider that it is still very early days and I expect the carehome staff are finding their feet with regard as to how to treat your mum. It was different for me as I cared for my dad in his own home until a massive deterioration after a stroke landed him in a carehome.

It took a while, probably about a month or so before the staff got to know my dad and he became relaxed enough to have a laugh and a joke with them. He was sometimes food-stained, not often though and this also used to happen at home.

Dad found the noise and the shouting and crying of some of the people with dementia upsetting at times and , if this happened, he was allowed to retreat to his own room. Someone always had to take him though as he had no sense of direction by this point. He did join in with some of the activities and he was always dressed in his own clothes which I know doesn’t always happen in carehomes. But my dad was already, although I didn’t know it at the time, nearing the end of his road.

I always hoped to keep dad at home until the end so I understand your feelings. I think my dad did improve for a short while when he was in the home, after he’d settled and I hope your mum will once she makes friends. It’s very hard and I feel for you and your mum.

 

[SofaSoGood]

I visited yesterday for the first time. It was actually quite shocking. When I arrived Mum was wandering about in the communal lounge holding someone else’s jumper like a cuddly toy. When she saw me she instantly recognized me (remember she has MD) and came running up, grasped me into a hug and said “Bless your heart, you’ve come to take me home!”. Luckily there was a communal sing song going on around the TV so, as a distraction, I encouraged her to join in and for an hour she and I sat and tried to join in with WW1 and music hall songs, Danny Boy and sea shanties despite the fact that she kept bemoaning that she used to know the words but can’t remember them any more. Once this had finished and the execrable film Bruce Almighty had replaced it, we moved away. Her hair was scruffy, she had on a jumper that showed a lot of vest and her trousers had a large grease stain on them (which I accept could have happened at lunch time that day). She continually mumbled a stream of unconnected and meaningless sentences and whilst she was in the loo, I went to her room to find, at the bottom of the wardrobe, her slippers, two tee shirts and a hairbrush bundled into a jumper which had the roll-neck and sleeves tied together in a bundle. It looked like it should be in a red and white spotted hankie on the end of a stick. When I got back to the lounge she was telling an infirm woman that she was saving the seat for someone else (me) and sending her off. I managed to retrieve that situation following which, after almost two hours, I made it to the lift and disappeared despite the fact that each time I moved she said desperately “ you will come back, won’t you?”. Outside it was almost dark, miserable and pelting with rain. I’ve heard the term ‘pathetic fallacy’ in which the environment and elements reflect the inner condition of the main protagonist in literature. Well, now I know what that feels like.

HOW can she have changed so much in 72 hours? On Monday evening we were watching University Challenge together and despite the fact that she (make that, we) couldn’t understand the questions, she was leaning forward towards the TV saying “come on, get on with it!” and wouldn’t go to bed until it was over. The next day, she was waving out of the window as her companion left on her scooter after coffee, smiling but under her breath cheekily saying “ok, that’s enough, go on now” as Vic waved back furiously for over a minute. She could get herself up, make a cup of tea and articulate how she was feeling. How did she become this disheveled, distracted, broken creature in so short a time?

I agreed to this because I thought having company 24/7 would help her anxiety and actually being with others who share the same condition would make her feel less self-conscious about it. We were warned by all of the professionals that her cognitive state would deteriorate if she went into care but I didn’t expect this in just three days. Several of her cohabitatants spent the entire time I was there - so I suppose it happens continuously - asking when they were going home, never sitting down just wandering up and down the corridors and trying to get into the lift with guests or staff. I dread that Mum will become one of those poor tortured souls rather than eventually accepting her situation and settling. I asked my brother yesterday when I got back “have we done the right thing?”. His reply, “we’ve got to see it through”. I don’t think I will ever stop feeling guilty for doing this to her - accelerating her decline.

I was told on Thursday and again on Friday by the CH that my presence would most likely unsettle Mum as she continually asks for me. I’m now beginning to think it is better not to go, at least for a while, as the experience is ultimately negative for both of us. I used to be a rational lawyer, now I’m just a bundle of visceral emotions. I hope both Mum and I settle quickly but I can’t help wishing we’d never taken this step.

Interesting. And a bit scary
My father had “manageable” Alzheimers/dementia and was cared for by my mother- not very able physically - and myself with no outside help. But he developed a serious eye problem and was suddenly admitted to hospital as an inpatient for 6 days. That experience (and possibly some of the drugs they gave him) caused a sudden and serious deterioration in his condition
Nobody will say whether it was the drugs or the sudden move to a hospital environment (probably both I guess) which did the damage, but it was very demanding and traumatic to have him in a hospital room, puzzled and worried most of the time. It was extremely tiring for me to travel back and forwards and to keep him company there most of the day, but seeing how upset he was I felt I had to do it
He’s been very very hard work ever since & frankly I’m super-worried that a move to a Dementia Home - which may not be far off - even for respite care would cause another step-change in his condition. So we’re soldiering on at home
I tell myself that I’m being over-pessimistic but I’ve visited homes recently (nice staff, good surroundings) and left feeling miserable. As people say on these threads nobody would look after and reassure him like family
If I KNEW that he’d be happy at a Home things would be much easier, but I think it highly unlikely. He would never accept being away from my mother or fall in line with an unfamiliar routine. Or at least that’s my belief
So until there is a real crisis I don’t see any changes ahead. And then I suppose we will just have to accept any Home which has space. My master plan of finding a highly suitable Home, using it first for respite care and then permanently when the time is right seems to be pie in the sky

 

[Topsy Tiger]

Thank you so much @Rosalind297 @Dimpsy @Grannie G @Palerider and @Bunpoots. Your words of counsel are more valued than you will ever know.

The care home is the top rated dementia home in the vicinity and I agree with you @Grannie G that it might be an issue at weekends. There certainly weren’t that many carers around although there were house-keeping staff and an events Co-ordinator (who disappeared after an hour as she seems to be developing an abscess on a tooth).

Things have moved on a bit since I made the post that you responded to however.

I got a call around 10.30 this morning to say that a doctor had to be called to Mum at 3am this morning as she had taken some pills. She apparently has been wandering at night, so much so that the CH put a pressure pad by her bed. It went off at 3am so the night duty carer went along to find a strip of paracetamol with a number (they didn’t specify how many) missing. Now I know that when I moved her things in on Tuesday I handed the thyroxine and dispersible aspirin, which she takes every day, to a carer. I did leave a box of Laxido and a strip of paracetamol for her frequent headaches, in the bedside table and when I was asked about the Laxido (which is on her prescription form) I said I’d left it there as it was an ‘as and when’ treatment. I was told that they had to keep it in the medicine cupboard so I assume removed it. I didn’t think to mention the paracetamol. How could they not have spotted it? The strip was next to the Laxido and the hearing aid batteries and cases (lost hearing aids were retrieved from one of her pockets on Friday when I took my concerns to the duty manager who didn’t know they were lost). I will forever blame myself for taking them in and forgetting to mention them but in truth I do not know how or why the CH staff haven’t familiarised themselves with her belongings.

Anyway, the doctor said that if she had taken all of those that were missing the dose wasn’t large enough to do any harm. She is now on an hourly watch, whatever that means. The senior care assistant who called me said that Mum was “alright” and had had some breakfast. I asked what is she doing now, to be told that she is wandering the corridors - just like those poor people I saw yesterday.

I phoned brother as he is due to visit her today so no doubt they will tell him and I wanted to tell him first as it was I who took the tablets in. He said he thought she must have mistaken them for sweets. I know better though. When she has felt particularly poorly over the past few moths, she has asked me what she can take to “leave the world and go home”. I’m certain in my own mind that she was lying awake, confused, bewildered and frightened just as I expressed in my very first post, and looked for a way to finish it. And now she is pacing the corridors like a tiger in a cage. I have never felt so heart-broken.

I will wait to see what my brother and his wife have to say when they have visited this afternoon. With the best will in the world, he isn’t blessed with a huge amount of emotional intelligence, compounded by the fact that he hates distress of any sort (you should see him squirm if I get tearful) so I expect a bland attempt at trying to comfort me by saying she was fine. In the meantime, I have a 96yo, who keeps phoning me floods of tears because she misses my Mum, to pacify.

Oh for a time machine. Whether I would go back to before this nightmare began or forward to when it is all over, I honestly don’t know.

 

[Topsy Tiger]

Interesting. And a bit scary

See further post

It is a minefield. Respite as a trial is probably a good plan.

 

[TNJJ]

Interesting. And a bit scary
My father had “manageable” Alzheimers/dementia and was cared for by my mother- not very able physically - and myself with no outside help. But he developed a serious eye problem and was suddenly admitted to hospital as an inpatient for 6 days. That experience (and possibly some of the drugs they gave him) caused a sudden and serious deterioration in his condition
Nobody will say whether it was the drugs or the sudden move to a hospital environment (probably both I guess) which did the damage, but it was very demanding and traumatic to have him in a hospital room, puzzled and worried most of the time. It was extremely tiring for me to travel back and forwards and to keep him company there most of the day, but seeing how upset he was I felt I had to do it
He’s been very very hard work ever since & frankly I’m super-worried that a move to a Dementia Home - which may not be far off - even for respite care would cause another step-change in his condition. So we’re soldiering on at home
I tell myself that I’m being over-pessimistic but I’ve visited homes recently (nice staff, good surroundings) and left feeling miserable. As people say on these threads nobody would look after and reassure him like family
If I KNEW that he’d be happy at a Home things would be much easier, but I think it highly unlikely. He would never accept being away from my mother or fall in line with an unfamiliar routine. Or at least that’s my belief
So until there is a real crisis I don’t see any changes ahead. And then I suppose we will just have to accept any Home which has space. My master plan of finding a highly suitable Home, using it first for respite care and then permanently when the time is right seems to be pie in the sky

I didn’t believe my dad would either as he wouldn’t go into respite.But I started it off with him going in to daycare once a month.Now he has gone into respite for 3weeks but he is now not bothered about coming home. He has taken it like duck to water,surprisingly.. But, it is early days..

 

[Rosalind297]

Good god @Topsy Tiger, what a shocking call to have received.

Please don’t beat yourself up about the paracetamol but there really should be some sort of enquiry into how this was allowed to happen four days after she went in.

Honestly my thoughts are with you today. I hope you get genuinely better news later this afternoon.

 

[TNJJ]

Thank you so much @Rosalind297 @Dimpsy @Grannie G @Palerider and @Bunpoots. Your words of counsel are more valued than you will ever know.

The care home is the top rated dementia home in the vicinity and I agree with you @Grannie G that it might be an issue at weekends. There certainly weren’t that many carers around although there were house-keeping staff and an events Co-ordinator (who disappeared after an hour as she seems to be developing an abscess on a tooth).

Things have moved on a bit since I made the post that you responded to however.

I got a call around 10.30 this morning to say that a doctor had to be called to Mum at 3am this morning as she had taken some pills. She apparently has been wandering at night, so much so that the CH put a pressure pad by her bed. It went off at 3am so the night duty carer went along to find a strip of paracetamol with a number (they didn’t specify how many) missing. Now I know that when I moved her things in on Tuesday I handed the thyroxine and dispersible aspirin, which she takes every day, to a carer. I did leave a box of Laxido and a strip of paracetamol for her frequent headaches, in the bedside table and when I was asked about the Laxido (which is on her prescription form) I said I’d left it there as it was an ‘as and when’ treatment. I was told that they had to keep it in the medicine cupboard so I assume removed it. I didn’t think to mention the paracetamol. How could they not have spotted it? The strip was next to the Laxido and the hearing aid batteries and cases (lost hearing aids were retrieved from one of her pockets on Friday when I took my concerns to the duty manager who didn’t know they were lost). I will forever blame myself for taking them in and forgetting to mention them but in truth I do not know how or why the CH staff haven’t familiarised themselves with her belongings.

Anyway, the doctor said that if she had taken all of those that were missing the dose wasn’t large enough to do any harm. She is now on an hourly watch, whatever that means. The senior care assistant who called me said that Mum was “alright” and had had some breakfast. I asked what is she doing now, to be told that she is wandering the corridors - just like those poor people I saw yesterday.

I phoned brother as he is due to visit her today so no doubt they will tell him and I wanted to tell him first as it was I who took the tablets in. He said he thought she must have mistaken them for sweets. I know better though. When she has felt particularly poorly over the past few moths, she has asked me what she can take to “leave the world and go home”. I’m certain in my own mind that she was lying awake, confused, bewildered and frightened just as I expressed in my very first post, and looked for a way to finish it. And now she is pacing the corridors like a tiger in a cage. I have never felt so heart-broken.

I will wait to see what my brother and his wife have to say when they have visited this afternoon. With the best will in the world, he isn’t blessed with a huge amount of emotional intelligence, compounded by the fact that he hates distress of any sort (you should see him squirm if I get tearful) so I expect a bland attempt at trying to comfort me by saying she was fine. In the meantime, I have a 96yo, who keeps phoning me floods of tears because she misses my Mum, to pacify.

Oh for a time machine. Whether I would go back to before this nightmare began or forward to when it is all over, I honestly don’t know.

An hourly watch is when someone is watching your mother for any deterioration.Everything is recorded.

 

[kindred]

I visited yesterday for the first time. It was actually quite shocking. When I arrived Mum was wandering about in the communal lounge holding someone else’s jumper like a cuddly toy. When she saw me she instantly recognized me (remember she has MD) and came running up, grasped me into a hug and said “Bless your heart, you’ve come to take me home!”. Luckily there was a communal sing song going on around the TV so, as a distraction, I encouraged her to join in and for an hour she and I sat and tried to join in with WW1 and music hall songs, Danny Boy and sea shanties despite the fact that she kept bemoaning that she used to know the words but can’t remember them any more. Once this had finished and the execrable film Bruce Almighty had replaced it, we moved away. Her hair was scruffy, she had on a jumper that showed a lot of vest and her trousers had a large grease stain on them (which I accept could have happened at lunch time that day). She continually mumbled a stream of unconnected and meaningless sentences and whilst she was in the loo, I went to her room to find, at the bottom of the wardrobe, her slippers, two tee shirts and a hairbrush bundled into a jumper which had the roll-neck and sleeves tied together in a bundle. It looked like it should be in a red and white spotted hankie on the end of a stick. When I got back to the lounge she was telling an infirm woman that she was saving the seat for someone else (me) and sending her off. I managed to retrieve that situation following which, after almost two hours, I made it to the lift and disappeared despite the fact that each time I moved she said desperately “ you will come back, won’t you?”. Outside it was almost dark, miserable and pelting with rain. I’ve heard the term ‘pathetic fallacy’ in which the environment and elements reflect the inner condition of the main protagonist in literature. Well, now I know what that feels like.

HOW can she have changed so much in 72 hours? On Monday evening we were watching University Challenge together and despite the fact that she (make that, we) couldn’t understand the questions, she was leaning forward towards the TV saying “come on, get on with it!” and wouldn’t go to bed until it was over. The next day, she was waving out of the window as her companion left on her scooter after coffee, smiling but under her breath cheekily saying “ok, that’s enough, go on now” as Vic waved back furiously for over a minute. She could get herself up, make a cup of tea and articulate how she was feeling. How did she become this disheveled, distracted, broken creature in so short a time?

I agreed to this because I thought having company 24/7 would help her anxiety and actually being with others who share the same condition would make her feel less self-conscious about it. We were warned by all of the professionals that her cognitive state would deteriorate if she went into care but I didn’t expect this in just three days. Several of her cohabitatants spent the entire time I was there - so I suppose it happens continuously - asking when they were going home, never sitting down just wandering up and down the corridors and trying to get into the lift with guests or staff. I dread that Mum will become one of those poor tortured souls rather than eventually accepting her situation and settling. I asked my brother yesterday when I got back “have we done the right thing?”. His reply, “we’ve got to see it through”. I don’t think I will ever stop feeling guilty for doing this to her - accelerating her decline.

I was told on Thursday and again on Friday by the CH that my presence would most likely unsettle Mum as she continually asks for me. I’m now beginning to think it is better not to go, at least for a while, as the experience is ultimately negative for both of us. I used to be a rational lawyer, now I’m just a bundle of visceral emotions. I hope both Mum and I settle quickly but I can’t help wishing we’d never taken this step.

all my sympathy and fellow feeling. I did a nursing cadetship when I was 16 in a unit for elderly mentally infirm (not called that then) and was so shocked and distressed on my first day that I did not believe I could survive it - it was full of people with dementia but then (early sixties) it was believed to be delayed shell shock.
After a day or two, I saw the residents as individuals I could relate to and loved it.
I volunteer in the nursing home in which my beloved husband recently died. We have several residents who pace and wander and they are not really lost souls. It is the stage they are at and this often does calm.
I think seeing a beloved one in this environment is a hell of shock for us. Strangely, it does seem to get easier. I hope it will for you. Warmest, Kindred.

 

[Moggymad]

My heart goes out to you. I well remember the first time I visited mum ( next day) after her move into care & I was hopping mad to see her wandering about with trousers soaked in urine because she didn't know where the toilet was (not wearing a pad & had a Uti). The first staff member I found was the manager & she took control & washed & changed mum herself & made sure staff were told. At that moment the urge to gather mum up & take her away was so strong. Thankfully mum did settle although she did deteriorate a bit but that stabilised as well. It does take time for staff to get to know a new resident & how much the resident will allow them to help. It is a learning curve for everyone. The same reasons still exist that you based your decision on to move her to residential care. It really is such an emotional time for everyone.

 

[annielou]

I'm not surprised you're shocked and upset by last night and last few days I would be too.
My mum not eligible for care home yet but I think will be sometime soon so I read these post with interest as research.
My mum gets up and wanders from room to room looking for things or gets up to get something gets distracted and wanders wondering what she was doing. I thought that when people in homes wandered they were probably distressed, possibly looking for something as mum does at home or trying to get out.
The other week we took mum to look at a ch for possible respite and walked in to a lady who was wandering the corridor, she was a bit upset and took a liking to mum and my sister and stayed with us quite a while. Two different carers appeared in seconds, they had looked busy when we appeared but as soon as she approached us they came to make sure we were ok (so they must have been keeping an eye on her). Mum went into carer mode herself and held the ladies hand and chatted away to her.
When we moved on to our tour the carer showing us round explained the particular lady tended to get confused after lunch and had a burst of energy so walked up and down the corridors for a while, they had found she calmed quicker if they left her to walk for a little bit but keep an eye on her.
When we came back downstairs towards end of our tour she was going with one of the carers for a cup of tea and came back to say bye to us and she seemed much calmer.
While on the last corridor another lady walked past and said hello then told us she was just walking off her lunch, apparently she walked the corridors for a while every afternoon.
I'd never thought of it that way and would have thought before they were wandering like lost souls. Which some possibly are but it would seem not all.
The way the carers we saw treated both ladies was really nice and as though they knew both ladies ways well. Which I imagine takes time for them to learn what works best with each person and for the person to get used to new people and a new place.
I do hope thats the case for your mum in her home and mine if she ever goes to live in one.
It must be so worrying wondering if she's being looked after properly and will be ok and wondering how long to wait to see if she settles and if its the right place for her. Sending you lots of love and hope for things to work well for your mum x

 

[Sarasa]

@Topsy Tiger , your mother sounds a lot like mine. Mine is four years younger but also has macular degeneration and if I get my departure wrong, gets upset as she thinks I'm going to take her away.
My mum is fiercely independent and insists on managing her own personal care even though I think she is now at a stage where she probably needs help to dress appropriately. She been averse to showering ever since she moved to the home, but does have them occasionally. I think it’s time I spoke to the carers about getting a bit more hands on.
I don’t think you realise till someone goes into care what a steep learning curve it is for the family, trying to adjust to the new reality.