Mum did so incredibly well while Dad was ill and after he died. In fact, almost too well. But I guess it took it's toll on her in other ways. I can't remember when exactly, but we started to worry about her memory a while ago. She'd struggle to find words, too, and get really frustrated while we played the guessing game to work out what the song was, who the actor was, what the tv programme was, etc..
I think it was early 2013 that I tried to have "the conversation" with her about maybe seeing a doctor. Her mood was low and we wondered if it was depression, or early signs of cognitive change. I made a complete mess of our chat and mum at one point looked as if she was going to burst into tears so I just backed off and left it. I think shortly after this Lorraine engineered a GP visit during which they did the MMSE, and mum did quite well. In fact she was keen on letting us all know afterwards that the doctor told her she was a "very intelligent woman, and there was nothing wrong with her". Still something didn't feel right.
To cut a long story short, in September 2013, mum had a fall and ended up in hospital. She was diagnosed with a urinary tract infection and spent nearly 3 weeks in there, having various tests for various things. She was never the same again. In hospital she was withdrawn and miserable and very vocal about not wanting to be there. She stopped eating. She was saying things to people that hadn't happened. All very odd. When she was discharged we had a support package put in place and a referral to the memory clinic, and that was the start of our dementia journey proper.
So fast forward to May 2016. Mum has been a resident in Widnes Hall (WH) care home since March. She became unable to stay in her apartment as she had started wandering out of her home at night and had even got outside a couple of times. That, combined with other things, led us to reaching the difficult decision to look for a care placement. Initially, mum was in the residential unit at Widnes Hall, as she is still a very pleasant lady and quite easy to look after in many respects. Last week, they decided (with our consent) to move mum to the dementia unit as they felt she'd mix better there. Wow. What a different place that is.
Roy and I went for the first time on Saturday, and again on Sunday, and came out quite affected by what we'd seen. Dealing with mum and her dementia has been relatively easy (if I don't think too deeply about it) because a) it's my mum and b) she's changed gradually and so I have just become used to it all over time. But being in a room with a dozen (mainly) women with moderate dementia - it really, really brings home how awful this condition is.
All the doors are keypad coded at Widnes Hall - when we arrived on Saturday, and pushed open the door in mum's unit, a smart lady in an outdoor coat waved frantically at us from halfway down the corridor. A sort of "hold that door" type of wave. We carried on in and spotted mum, so I was busy saying hello to her so stopped really taking any notice of the lady.
As we headed down the corridor to mum's room to get her things for going out, a thin lady with lanky hair and very few teeth came towards us. Mum immediately looked unhappy and started heading back to the dining room. I told her "This way mum, back to your room." "I can't" she said, indicating this lady. She clearly didn't want to pass her, but as we had to, she just said to the lady "Go away and don't come back" as we walked by. I have to say that the woman was invading mum's personal space! But I chided her for being unkind. As we got into mum's room I was looking for her stuff and as I turned round, there was the lady - she'd followed us into mum's room. I don't know her name yet but for now will call her "the Shadow" because she just seemed to be there by us all the time, silently appearing out of nowhere. I asked Roy to take her out as mum hadn't noticed and I didn't want to upset her.
We headed back down to the dining room to find Diana, the carer who was going to give me mum's meds for the night (she was staying over with us). The lady with the coat - Margaret - was still in the corridor and trying all the doors that vaguely looked like exits. "These are all locked" she told me, "and I need to get out. I've got to get back and feed my 2 kids". Ah! I'd heard about Margaret from my sister. She tries all day to leave as she thinks she has children to take care of. I told her that I was sure somebody would be looking after the kids and she said, yes probably their father. We passed on by.
As I went down to the meds room with Diana, Margaret told us that "this door was locked and that door was locked" and she needed to get out. Diana did an incredible job of chatting to her without making her feel silly or without making her any more agitated. As I waited and watched as Diana sorted out the meds, Margaret came back in. "I'm going to put my head in a bowl of cyanide" she announced. "Oh, I wouldn't do that" I counselled. Diana told her it probably wouldn't taste very nice.
She thought about it, then changed tack. "Well I'll go to prison. I'll to prison and I'll have the time of my life!" she said, defiantly. "I won't care because I'll be having the time of my life and I don't give a shit!". At this point I wasn't really sure how you answer that! So I just nodded and smiled and agreed that if it was what she wanted well, why not.
Back to the dining room to get mum. Margaret was still tugging at door handles of locked doors and the Shadow had made a reappearance. They'd had Eccles cakes after lunch and the dining room floor was layered in flaky pastry bits. Mum was sitting with Roy, waiting patiently for us.
Let's get out of here, I thought. As we were leaving, Diana did a masterful job of distracting Margaret and leading her in the opposite direction so that she couldn't see us. She'd have undoubtedly made a break for it had she seen that door open. It had already happened earlier in the day, apparently - a chap visiting had held the door open for her - thinking (as I had earlier) that she was leaving after visiting somebody else.
On Saturday night mum was with us. We took her to the theatre in Leeds to see Vincent & Flavia in the Last Tango. Great show and I think she liked it, but for any future shows, I think matinees are best as mum is better during the day than at night. Her attention span isn't what it used to be and she doesn't get rapt in a performance like she once did.
Sunday morning we set off back across the Pennines. We decided not to keep mum at ours too long as it seemed to unsettle her last time and she was quite out of sorts for a few days back at WH. Sunday was a beautiful day so we decided to have a walk around the gardens at Dunham Massey Before taking mum back. Gorgeous grounds and the bluebells were out in force. We had cake and scones in the café. I took mum a packed lunch of some smoked salmon blinis - about the only thing she ate properly this weekend. This is a lovely photo of mum but she was actually telling me she was bored and wanted to go!
We arrived back at WH at about 3. Margaret was nowhere to be seen but the small lounge adjacent to the dining area was busy. Two people dozed on one sofa, 2 ladies looked like they were having a chat on another and a lady was in visiting her dad. A tiny lady with whiskers was sitting up in a dining chair in the lounge. The dining tables also had a few people on, we took one and made a cuppa. The next table had a new lady, Ivy, sitting on it with her son. Ivy didn't look too well and nor could she hear a thing anybody said with her. After much fiddling with her hearing aid and yelling "Can you hear me, mother" (which did make me chuckle), he gave up. Ivy sat with her head down, coughing and spluttering from time to time. Can you hear me mother?
I'd brought some CDs back to leave in the lounge and as I took them over to the cabinet with the player on, one of the chatting ladies asked me what was I doing - in more of a nosy way than a challenging way. I explained I was putting some new CDs there She asked me what they were for - for you to all play and listen to, I replied. "Oh that should be ok then" she said. Ah, I think she may be in charge here. So I thanked her and put them on a small pile. Diana came over and started to play one.
After a while I decided that we should move mum to one of the sofas which was empty. We were going to be leaving just before 4 so I decided to settle mum there before we did. She sat down and Roy took the place next to her. Which was just as well as the Shadow appeared and I thought the last thing mum would want was for her to sit next to her. I gave mum her doll (the reason she has a doll is another story), and very soon the "baby" was attracting attention. Despite the fact that the doll was wearing a pink hat and dress, the lady opposite assumed it was a baby boy and asked for his name. Mum had also corrected me a few weeks earlier and said "it's a he" when I'd asked how she was. Anyway, mum said she didn't know the baby's name and a carer suggested Jessica would be nice. Which would have been great if mum was able to say the name.... although its academic as she'll forget anyway.
Bossy lady asked to have a hold of the baby. Mum had been nursing the baby on her shoulder but not really paying him (!) much attention, so she said that would be ok and passed him over. The lady took him with great care (unlike mum who had him by the scruff of the neck) and immediately started to coo and chat to him and tickle his face and under his chin. I can see why doll therapy is so popular in care homes for dementia residents.
Although bossy lady's chatting companion looked bemused and seemed to me to be quietly laughing at the others, as if SHE knew it wasn't a real baby even if they didn't.
The Shadow made another appearance. Mum started saying "No thank you" as soon as she got close. She glided off and ended up practically sitting on bossy lady's knee, which didn't seem to phase either of them. We decided to leave. I was slightly nervous that the Shadow would move in on Roy's empty seat by mum, but mum would either have got up and moved or ignored her so what could we do?
Mum put on a brave face as we left, I tell her now that I have to go to work and she understands that. I found out the next day that the Shadow was walking around with one of mum's necklaces on, and mum's jewelry box was missing (although was later found under mum's pillow). No wonder mum isn't keen on her. I think she's tried to take the doll on a few occasions, too.
I don't remember the last time I had a normal conversation with my mum. I used to sometimes be driving her to stay with us and thinking "oh I wish you'd just shut up for a minute, mum" as she would talk and talk and talk all the way. Now I would give anything to hear that again. Be careful what you wish for.............
I think it was early 2013 that I tried to have "the conversation" with her about maybe seeing a doctor. Her mood was low and we wondered if it was depression, or early signs of cognitive change. I made a complete mess of our chat and mum at one point looked as if she was going to burst into tears so I just backed off and left it. I think shortly after this Lorraine engineered a GP visit during which they did the MMSE, and mum did quite well. In fact she was keen on letting us all know afterwards that the doctor told her she was a "very intelligent woman, and there was nothing wrong with her". Still something didn't feel right.
To cut a long story short, in September 2013, mum had a fall and ended up in hospital. She was diagnosed with a urinary tract infection and spent nearly 3 weeks in there, having various tests for various things. She was never the same again. In hospital she was withdrawn and miserable and very vocal about not wanting to be there. She stopped eating. She was saying things to people that hadn't happened. All very odd. When she was discharged we had a support package put in place and a referral to the memory clinic, and that was the start of our dementia journey proper.
So fast forward to May 2016. Mum has been a resident in Widnes Hall (WH) care home since March. She became unable to stay in her apartment as she had started wandering out of her home at night and had even got outside a couple of times. That, combined with other things, led us to reaching the difficult decision to look for a care placement. Initially, mum was in the residential unit at Widnes Hall, as she is still a very pleasant lady and quite easy to look after in many respects. Last week, they decided (with our consent) to move mum to the dementia unit as they felt she'd mix better there. Wow. What a different place that is.
Roy and I went for the first time on Saturday, and again on Sunday, and came out quite affected by what we'd seen. Dealing with mum and her dementia has been relatively easy (if I don't think too deeply about it) because a) it's my mum and b) she's changed gradually and so I have just become used to it all over time. But being in a room with a dozen (mainly) women with moderate dementia - it really, really brings home how awful this condition is.
All the doors are keypad coded at Widnes Hall - when we arrived on Saturday, and pushed open the door in mum's unit, a smart lady in an outdoor coat waved frantically at us from halfway down the corridor. A sort of "hold that door" type of wave. We carried on in and spotted mum, so I was busy saying hello to her so stopped really taking any notice of the lady.
As we headed down the corridor to mum's room to get her things for going out, a thin lady with lanky hair and very few teeth came towards us. Mum immediately looked unhappy and started heading back to the dining room. I told her "This way mum, back to your room." "I can't" she said, indicating this lady. She clearly didn't want to pass her, but as we had to, she just said to the lady "Go away and don't come back" as we walked by. I have to say that the woman was invading mum's personal space! But I chided her for being unkind. As we got into mum's room I was looking for her stuff and as I turned round, there was the lady - she'd followed us into mum's room. I don't know her name yet but for now will call her "the Shadow" because she just seemed to be there by us all the time, silently appearing out of nowhere. I asked Roy to take her out as mum hadn't noticed and I didn't want to upset her.
We headed back down to the dining room to find Diana, the carer who was going to give me mum's meds for the night (she was staying over with us). The lady with the coat - Margaret - was still in the corridor and trying all the doors that vaguely looked like exits. "These are all locked" she told me, "and I need to get out. I've got to get back and feed my 2 kids". Ah! I'd heard about Margaret from my sister. She tries all day to leave as she thinks she has children to take care of. I told her that I was sure somebody would be looking after the kids and she said, yes probably their father. We passed on by.
As I went down to the meds room with Diana, Margaret told us that "this door was locked and that door was locked" and she needed to get out. Diana did an incredible job of chatting to her without making her feel silly or without making her any more agitated. As I waited and watched as Diana sorted out the meds, Margaret came back in. "I'm going to put my head in a bowl of cyanide" she announced. "Oh, I wouldn't do that" I counselled. Diana told her it probably wouldn't taste very nice.
She thought about it, then changed tack. "Well I'll go to prison. I'll to prison and I'll have the time of my life!" she said, defiantly. "I won't care because I'll be having the time of my life and I don't give a shit!". At this point I wasn't really sure how you answer that! So I just nodded and smiled and agreed that if it was what she wanted well, why not.
Back to the dining room to get mum. Margaret was still tugging at door handles of locked doors and the Shadow had made a reappearance. They'd had Eccles cakes after lunch and the dining room floor was layered in flaky pastry bits. Mum was sitting with Roy, waiting patiently for us.
Let's get out of here, I thought. As we were leaving, Diana did a masterful job of distracting Margaret and leading her in the opposite direction so that she couldn't see us. She'd have undoubtedly made a break for it had she seen that door open. It had already happened earlier in the day, apparently - a chap visiting had held the door open for her - thinking (as I had earlier) that she was leaving after visiting somebody else.
On Saturday night mum was with us. We took her to the theatre in Leeds to see Vincent & Flavia in the Last Tango. Great show and I think she liked it, but for any future shows, I think matinees are best as mum is better during the day than at night. Her attention span isn't what it used to be and she doesn't get rapt in a performance like she once did.
Sunday morning we set off back across the Pennines. We decided not to keep mum at ours too long as it seemed to unsettle her last time and she was quite out of sorts for a few days back at WH. Sunday was a beautiful day so we decided to have a walk around the gardens at Dunham Massey Before taking mum back. Gorgeous grounds and the bluebells were out in force. We had cake and scones in the café. I took mum a packed lunch of some smoked salmon blinis - about the only thing she ate properly this weekend. This is a lovely photo of mum but she was actually telling me she was bored and wanted to go!
We arrived back at WH at about 3. Margaret was nowhere to be seen but the small lounge adjacent to the dining area was busy. Two people dozed on one sofa, 2 ladies looked like they were having a chat on another and a lady was in visiting her dad. A tiny lady with whiskers was sitting up in a dining chair in the lounge. The dining tables also had a few people on, we took one and made a cuppa. The next table had a new lady, Ivy, sitting on it with her son. Ivy didn't look too well and nor could she hear a thing anybody said with her. After much fiddling with her hearing aid and yelling "Can you hear me, mother" (which did make me chuckle), he gave up. Ivy sat with her head down, coughing and spluttering from time to time. Can you hear me mother?
I'd brought some CDs back to leave in the lounge and as I took them over to the cabinet with the player on, one of the chatting ladies asked me what was I doing - in more of a nosy way than a challenging way. I explained I was putting some new CDs there She asked me what they were for - for you to all play and listen to, I replied. "Oh that should be ok then" she said. Ah, I think she may be in charge here. So I thanked her and put them on a small pile. Diana came over and started to play one.
After a while I decided that we should move mum to one of the sofas which was empty. We were going to be leaving just before 4 so I decided to settle mum there before we did. She sat down and Roy took the place next to her. Which was just as well as the Shadow appeared and I thought the last thing mum would want was for her to sit next to her. I gave mum her doll (the reason she has a doll is another story), and very soon the "baby" was attracting attention. Despite the fact that the doll was wearing a pink hat and dress, the lady opposite assumed it was a baby boy and asked for his name. Mum had also corrected me a few weeks earlier and said "it's a he" when I'd asked how she was. Anyway, mum said she didn't know the baby's name and a carer suggested Jessica would be nice. Which would have been great if mum was able to say the name.... although its academic as she'll forget anyway.
Bossy lady asked to have a hold of the baby. Mum had been nursing the baby on her shoulder but not really paying him (!) much attention, so she said that would be ok and passed him over. The lady took him with great care (unlike mum who had him by the scruff of the neck) and immediately started to coo and chat to him and tickle his face and under his chin. I can see why doll therapy is so popular in care homes for dementia residents.
Although bossy lady's chatting companion looked bemused and seemed to me to be quietly laughing at the others, as if SHE knew it wasn't a real baby even if they didn't.
The Shadow made another appearance. Mum started saying "No thank you" as soon as she got close. She glided off and ended up practically sitting on bossy lady's knee, which didn't seem to phase either of them. We decided to leave. I was slightly nervous that the Shadow would move in on Roy's empty seat by mum, but mum would either have got up and moved or ignored her so what could we do?
Mum put on a brave face as we left, I tell her now that I have to go to work and she understands that. I found out the next day that the Shadow was walking around with one of mum's necklaces on, and mum's jewelry box was missing (although was later found under mum's pillow). No wonder mum isn't keen on her. I think she's tried to take the doll on a few occasions, too.
I don't remember the last time I had a normal conversation with my mum. I used to sometimes be driving her to stay with us and thinking "oh I wish you'd just shut up for a minute, mum" as she would talk and talk and talk all the way. Now I would give anything to hear that again. Be careful what you wish for.............
