Four weeks ago today, mum was moved from the residential home she had been staying at since last November and into the nursing home where we expect she'll be for while yet. I must say the difference this move has made though has been positive and noticeable by all of us that have visited her, but now we've got to where we are I can't help feeling intensely guilty about how she had been wrenched from the comfort and routine of her home life with my dad. It's 4 months ago that it happened - 4 months that she hasn't stepped foot in the place she made her home for nearly 40 years.
The thing is, it wouldn't really be the first time she was taken away from her home and into unfamiliar surroundings, but that isn't something I think I've ever go into detail about here in this blog. It has been something I've had on my mind for years now.
Today though, I still feel the same dread whenever I'm making a visit to see her. I don't know if my father or my sister have the same feeling and I haven't asked. I don't think that will ever get any better, but at least on the last few occasions I've not had to witness her in the hysterically distressed states she has been in before while in the residential home.
The visit I made before last, I was greeted by the sight of her being led down the corridor in her underwear, a little emotional but not particularly distressed. Again, her voice was the first voice I heard when I got in the building. However, on that occasion the nurse and I managed to get her dressed and settled in her room and she was quite alright after a short while.
At my last visit, this past weekend, she was sat in the day room when I arrived, dressed and fairly clean, quite cheerfully tending to a cup of hot chocolate and biscuits with one of the members of staff. We left the day room and went to her own room just across the way, where we were able to spend time together to chat, listen to music and look through some old photos I had taken along.
My sister had brought along some Thai music tapes and I had brought along with me an old tape player my father still had at home. I actually remember buying her that player and she would listen to her Thai music - a particular style for the North East of Thailand. I was a little worried about playing the music now in case it triggered some emotion or memory and have an adverse effect on her mood, but she managed to have a little jig and move to the music while sat in her chair. After a while though she became distracted and wondered where the music was coming from.
What I felt quite encouraged at that visit was the fact that she told me she needed to use the bathroom, managed to get herself across the corridor to the toilet with me, use it without making a mess and even threw the tissue away down the pan. This may sound silly but previously it had been a very difficult thing to make sure she toileted properly and had a bad habit of storing the tissue or hiding it in places rather than flushing it down the toilet with everything else. She washed her hands, dressed herself properly and off we went back to her room.
I picked up on something my father had said too when he visited a couple of days before - that she looked particularly 'older' than she had been. I noticed it myself: she is losing weight, her facial features have slimmed down, her skin is changing. Even her eyes have become grey and misty.
I often wonder whether she knows where she is, or understands why she's there. It's a dreadful thing to think that they might believe that we've abandoned her, or don't want her. She might feel angry or sad at being somewhere she doesn't want to be, and wanting to go home. This is one of the things that gnaws away at me on top of the guilt. But I know I shouldn't feel guilty. People have told me I've done all that I could do and I should perhaps concentrate on other things now. She is where she needs to be and in good hands. The last few months have been exhausting but I feel I've done what I could and in her interests, but I still can't help feeling that awful guilt and sadness about how things have turned out for her. She doesn't deserve what she's been through.
Despite all the problems with memory and behaviour and everything else that dementia causes, she still knows who I am and how much I love her. I wonder though how long that might last.
Monday, 21 March 2016
Saturday, 5 March 2016
A Light in the Darkness
I had been dreading these last few days knowing that as soon as the weekend came, I'd be visiting mum. I had been in touch with the nursing home every day or so to check how she was, and each time the nurse-in-charge told me she had been a little more settled that the first week but was still being very aggressive and rejecting help when the staff tried to deliver personal care.
Of course, I still have the memory of my last week, a week ago now, in my mind and how awful it was to endure hearing her scream and wail on the other side of the wall while two nurses tried to clean and change her. My father however had made two visits since then and had experienced her in different moods. He didn't need to tell me how upsetting it was for him as I know just how he would have behaved himself while in her presence - I have seen it myself in the former residential home.
That same dread came over me as we made our way to the home and parked up. Our lad, nearly 11 months old now (and I am guilty that I haven't devoted much time or content on this blog to his development and progress as I had intended, but I guess the situation with mum had been the focus since November) was asleep so my wife stayed in the car while I checked in on my own to see how she was.
When I entered the corridor where the residents are housed, her voice was again the first thing I heard. That same thing that has been with me since I was as young as I can remember, still there all this time.
She was at the other end of the corridor in the second day room. She had half a beaker of milk and had spilled most of it on her trousers. She was at least dressed but wore no socks as usual. She instantly knew who I was and called my name, but was babbling and talking gibberish to the person sat next to her. I lead her back to her room ("Room 3") and found it encouraging that she was at least still mobile and able to get along holding the hand rail. I said I'd help to change her trousers, but she wanted to use the toilet - which fortunately is just opposite her room, so we went together to the door and after some encouragement, managed to get her inside without her taking her trousers down in the corridor. Sounds silly I know, but those of you who deal with this kind of thing regularly know exactly what I'm talking about.
The next surprise was that she also took her underwear down far enough and managed to sit on the toilet properly. Again, doesn't sound like much but a huge improvement on what we've experienced in the last couple of months. She drew her clothes us, washed her hands and out we went.
When I got back into the room with her, she even mentioned her grandson and said his name - which came as a shock to me at first. How did she remember? I know by that time that my wife had taken our son from the car and made their way past the window to the entrance, so she will have seen them.
The next thing was changing her trousers. She complained it was cold and obviously it wasn't comfortable sitting there with spilled liquid on them, so I managed to take them off without too much trouble, and one of the nursing staff noticed me trying to put on the new pair and she came in to assist. Mum managed to lift her leg up for us to put them on - again, another little sign of improvement compared to the last couple months.
The next thing was that she even lifted her feet to me when I wanted to put socks on for her. Previously in the residential home, she'd become afraid and tell me it hurts, but this time she complied without any issue.
Not only that, but she was generally more alert, smiling and spoke English more often with us.
If only each of our visits were like that, then we could at least breath a little sigh of relief and know that something good might be happening, despite all the awful experiences we've gone through in the last months.
Tomorrow is Mother's Day and we will visit again. We must hope for the best and expect the worst. Today may have just been a one-off - we shall never know. But quite honestly, I saw more of my mother today that I have done since the start of the year. She had regained some spark and some life in her that had been missing. It was a good visit.
Of course, I still have the memory of my last week, a week ago now, in my mind and how awful it was to endure hearing her scream and wail on the other side of the wall while two nurses tried to clean and change her. My father however had made two visits since then and had experienced her in different moods. He didn't need to tell me how upsetting it was for him as I know just how he would have behaved himself while in her presence - I have seen it myself in the former residential home.
That same dread came over me as we made our way to the home and parked up. Our lad, nearly 11 months old now (and I am guilty that I haven't devoted much time or content on this blog to his development and progress as I had intended, but I guess the situation with mum had been the focus since November) was asleep so my wife stayed in the car while I checked in on my own to see how she was.
When I entered the corridor where the residents are housed, her voice was again the first thing I heard. That same thing that has been with me since I was as young as I can remember, still there all this time.
She was at the other end of the corridor in the second day room. She had half a beaker of milk and had spilled most of it on her trousers. She was at least dressed but wore no socks as usual. She instantly knew who I was and called my name, but was babbling and talking gibberish to the person sat next to her. I lead her back to her room ("Room 3") and found it encouraging that she was at least still mobile and able to get along holding the hand rail. I said I'd help to change her trousers, but she wanted to use the toilet - which fortunately is just opposite her room, so we went together to the door and after some encouragement, managed to get her inside without her taking her trousers down in the corridor. Sounds silly I know, but those of you who deal with this kind of thing regularly know exactly what I'm talking about.
The next surprise was that she also took her underwear down far enough and managed to sit on the toilet properly. Again, doesn't sound like much but a huge improvement on what we've experienced in the last couple of months. She drew her clothes us, washed her hands and out we went.
When I got back into the room with her, she even mentioned her grandson and said his name - which came as a shock to me at first. How did she remember? I know by that time that my wife had taken our son from the car and made their way past the window to the entrance, so she will have seen them.
The next thing was changing her trousers. She complained it was cold and obviously it wasn't comfortable sitting there with spilled liquid on them, so I managed to take them off without too much trouble, and one of the nursing staff noticed me trying to put on the new pair and she came in to assist. Mum managed to lift her leg up for us to put them on - again, another little sign of improvement compared to the last couple months.
The next thing was that she even lifted her feet to me when I wanted to put socks on for her. Previously in the residential home, she'd become afraid and tell me it hurts, but this time she complied without any issue.
Not only that, but she was generally more alert, smiling and spoke English more often with us.
If only each of our visits were like that, then we could at least breath a little sigh of relief and know that something good might be happening, despite all the awful experiences we've gone through in the last months.
Tomorrow is Mother's Day and we will visit again. We must hope for the best and expect the worst. Today may have just been a one-off - we shall never know. But quite honestly, I saw more of my mother today that I have done since the start of the year. She had regained some spark and some life in her that had been missing. It was a good visit.
Wednesday, 2 March 2016
One Last Visit to the Old Home
Since mum was moved to the new nursing home I had intended to pay a visit to the former residential home that looked after her for three months - not only to return the card pass they had issued me for easy access in and out but to say something of a Goodbye to the staff and residents there.
Yesterday I had my chance and it was a strangely emotional experience. I went in the front entrance, signed my name in the book but didn't write who I was visiting. I passed into the main lobby area and let myself into the wing where mum used to be. I wasn't worried about hearing her wailing or seeing her in a bad state. But there was still the same aroma and temperature about the place which is unique to it. I daren't venture down the corridor to her room. I wonder if they had taken her name from the display at the door. I wonder too if the wet room has been given a good clean and whether anything remained from the little cupboard where they kept her toothbrush and toothpaste and other bits and bobs.
I managed to see some of the staff that had done their best to look after mum. Due to their shift patterns I perhaps didn't get to see 4 or 5 others that were normally there, but they recognised and greeted me straight away which I thought was very nice. I also said Hello to one of the residents who appears more alert than the others - whether she actually recognised and remembered me, or if she just acknowledged my Hello out of politeness, I don't know but that was nice to receive too.
I wasn't able to spend much time in their company but I imagine the mood and dynamics of the group had returned to some sort of normality since my mum's discharge. She was a challenge for them and her presence affected the other residents as well as the staff. What I did feel good about though is that they said how much they missed her. I must admit having a lump in my throat and did my best not to break down in front of them as I updated them on how she was.
One of the staff did point out that it had been a big part of our lives for the past three months, and it wouldn't be easy just to let it go. In this respect, a part of me still wants to keep in touch and visit them now and then.
I look ahead now to when I can visit mum again. I have images and sounds in my head which aren't pleasant and I know the same dread will take hold when I get near the place. I just hope that she's OK and settled and being looked after.
Yesterday I had my chance and it was a strangely emotional experience. I went in the front entrance, signed my name in the book but didn't write who I was visiting. I passed into the main lobby area and let myself into the wing where mum used to be. I wasn't worried about hearing her wailing or seeing her in a bad state. But there was still the same aroma and temperature about the place which is unique to it. I daren't venture down the corridor to her room. I wonder if they had taken her name from the display at the door. I wonder too if the wet room has been given a good clean and whether anything remained from the little cupboard where they kept her toothbrush and toothpaste and other bits and bobs.
I managed to see some of the staff that had done their best to look after mum. Due to their shift patterns I perhaps didn't get to see 4 or 5 others that were normally there, but they recognised and greeted me straight away which I thought was very nice. I also said Hello to one of the residents who appears more alert than the others - whether she actually recognised and remembered me, or if she just acknowledged my Hello out of politeness, I don't know but that was nice to receive too.
I wasn't able to spend much time in their company but I imagine the mood and dynamics of the group had returned to some sort of normality since my mum's discharge. She was a challenge for them and her presence affected the other residents as well as the staff. What I did feel good about though is that they said how much they missed her. I must admit having a lump in my throat and did my best not to break down in front of them as I updated them on how she was.
One of the staff did point out that it had been a big part of our lives for the past three months, and it wouldn't be easy just to let it go. In this respect, a part of me still wants to keep in touch and visit them now and then.
I look ahead now to when I can visit mum again. I have images and sounds in my head which aren't pleasant and I know the same dread will take hold when I get near the place. I just hope that she's OK and settled and being looked after.
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