Mother Daughter Story 3:

However, our relationship came crumbling down as my mother refused to accept my decision to divorce my husband. She thought I was having a mental breakdown. As everyone continued to get on with their lives, she just wouldn’t, I believe this was a pre-curse of her getting dementia. It was so illogical and peculiar - I was hurt by the shallow materialism.


It wasn’t till when Mum developed dementia that the reason behind her reaction appeared. My mother had once been in service to the Duke of Newcastle-under-Lyne at Clumber House in Nottinghamshire. This revelation finally showed me whom my mum really was, how far she’d come and how walking out on security and wealth was something she could not comprehend.


As my father got older and frailer it left me with no choice but to sell the house and move them into a flat. My mum never recovered from the shock of it, and when we arrived at the new flat she refused to leave the car.


After many traumatic weekends, we went to a meeting at the hospital where the psychiatrist explained they may need to section her, as they were about to she caught my eye and she said ‘I will do it for my baby’, she always called me her baby. It was very powerful; the last time she was ever my mum in that sense. She was then taken to hospital without having to be sectioned, brief explanation – did she go willingly then? where she stayed for 6 weeks before transferring to a nursing home.


She had gone from being my mum who was certainly getting more eccentric and old, this funny looking woman with dementia. The first time I went to visit, I virtually walked past her and then felt sick as I thought ‘shit. That’s my mum’.


My mother died on Christmas Day, although dementia stole her from me, it also gave her back to me. When I visited her to the day before we listened to 9 Lessons and Carols on Radio 4, she used to love listening to it, and as she did her eyes opened one last time.


I admire her confidence and her enormous strength, courage and determination. I wish I could say to her: ‘wow you are a woman of today, you are just amazing’.

Mother Daughter Story 2: Keep your ego out of the equation and don't be offended, angry or short tempered with that person.

I’m an only child, both my mother and father moved away from England, they were here for about a year, and had me a little later in their marriage they then divorced and both re-married. I was the only child to both my mum and my step dad and then also to my dad and my step mum. I was really close to all of my parents, but especially to my mum.

 

How dementia affected our relationship, and me especially? She was a woman you could talk to in such great depth, whether you were talking to her about your emotional feelings, the best way to approach psoriasis, or talking to her about intellectual things. And that gap of conversation just started to disappear. Conversations became very abbreviated, very basic and very simple, there was no longer that circular motion. It was sort of a “how are you” “I’m good”, “are you hungry”. It became very basic conversation, but we kept her working.

When you see someone with dementia, when you see someone you love decline and lose themselves, you want to keep their life as normal and as comfortable. We wanted to keep her everyday routines sort of steady on. So that's what I tried to do with her, I kept her work going, and her assistant noticed when she was working, she was at her best. She was at her most clearest, her most intuitive and she was really almost not missing a beat for quite a while.

For me as the daughter, you go into a different position, no longer are you really the daughter who needs to look up to her mother, who wants that emotional support. It is now me the daughter caring for my mother as if she is the child. You definitely have a huge loss, it's interesting, because the loss of my mother happened way before she passed away. Two years before she passed at least, the lost was there. There was that emotional let go, my mum was this amazing and vibrant person, the question is how could this of happened to her with her brilliance? But it has, so here we are. Being the only child it wasn't like I could go to a sister or a brother like here's mum and here's what we’re going to do. It was really up to me to figure out the best daily experience I could provide for her and the best thing I could provide for myself and my family.

She was living with us so that brought on a challenge because all of a sudden she was sun downing. She was getting confused with day and night, she would be walking around the house at 3 in the morning, none of us would lock ours doors and she would come in and pat my son on the head. She would do some really funny things, we found it kind of funny but kind of creepy, so eventually we had to lock our doors. She was safe in our house which was great, and as we lived up in the hills and our house was gated, so she was safe even if she went outside. It was pretty important that if she did walk around she wouldn't hurt herself. Physically she was fit as a fiddle, strong, good boned. So even if she fell or she tripped she would of bounced right back up, which was fantastic as often in situations like this and dementia you have people who are very unwell, and so you are dealing with both physical and mental issues. We had no physical issues, her body was healthy healthy healthy.

I'd say that it's very important to have a lot of patience and not to expect your parent, the one you love, to be anything more than what they are in that very moment. So if they are not remembering something, if they are not understanding what you are trying to tell them, you can never get upset, you can't get frustrated, you just go with the programme.

One of the things that really overcame her was the feeling of not being ‘home’, so even though she was in our home and she had been there for 20 years with us, she didn't feel at ‘home’. She kept packing up her purses and her bags with all her clothes and her underwear, she would then tell me, “I'm ready to go home”. When it first started happening I would say “what?” I would ask, “well where do you think home is?” She would she would point out the window and across the city, i'd tell her that we would just hang at the house and that she could go home tomorrow, she would settle for that. We would then unpack everything and put it away. This started to become a frequent cycle, it would happen not every day but probably 3/4 days a week. 

In addition to that it was getting a lot harder on my family, it was feeling too disjointed. So I decided to find the right person or people to care for he. I wanted to find a place that felt good for her and good for me, that I knew she would be happy in. I found a lovely 2 bedroom duplex, moved her in, moved in the caregivers and literally picked up her bedroom and planted it in her new place so it felt as normal as it could be. Put all my stepfather's art around her and all the things she loved, and created an environment that felt safe and like a home, and moved her in. She really did try to adjust, although she did try to escape a few times. 

We had about 6 months of her craziness trying to escape, I think it was that feeling of trying to find home. My interpretation of that is when you start to lose who you are, the memory, you're looking to find it and find yourself. She was like that for probably a good year, she was trying to find where she had gone.  She was so brilliant, so high functioning, so intuitive and there was part of her that still had that power, that source within her that just couldn't connect the dots. After she calmed down there was a really good year and a half when she was very content her days they were very simple.

She started to talk about London a lot and she was also talking to my step-father who had passed away, she felt his presence a lot, she would just be in the living room talking to him. She was definitely drifting out to that next level of moving on from this life. But she was very much still here.

For me as a daughter knowing my mum, there was a part of me that really wanted her to move on and not to be here alive, her quality of life was gone and she would've been furious, I would think to myself she would be so mad if she knew that she had dementia. he It was hard for me to see her to get worse and suffer, knowing this was the last thing she'd want to be was on this planet in that condition. When she passed away in March 2013, she couldn't of been more peaceful. She never really got physically sick, but she just had a weird symptom and the next thing I knew she was gone. We were lucky she never suffered physically, she never had to go to the hospital, I never put her on any medicine, there was nothing she was on, other than very low dosage calming medicine.

It's really important you keep your ego out of the equation and not be offended, angry or be short tempered with that person, you have to always come from an understanding, loving and caring place within yourself. I had such an amazing relationship with my mum, so it wasn't hard to feel compassion and be supportive. But there are a lot of people who don't have great relationships with their parents and in particularly their mum. Now they are faced with a mother they didn't care for them and who didn’t give them the support they needed, they are placed in a tough position. That's where as a person and a human being you have to really find the strength and the better part of yourself to overcome. You almost have to say, “How would I wanted to be treated?” Compassion is the only way, and your understanding of that person. Show as much love as you can.

You can't really prepare for dementia, I don't think it’s something you can know much about mentally until you're really in it. Maybe knowing less was better because I didn't have any preconceived ideas, or a plan based on other people’s experiences, so I think it was good for me to discover it as she was discovering it in a way.

Imagine a person standing outside, it's a clear sunny day, a cloud slowly comes down and all of a sudden the cloud is over their head. Well, my mother didn't hear or see the cloud, not a word. She never knew.

Mother Daughter Story 1: I Wanted To Make Up For Her Circumstances and Embellish Her Life.

We only quite liked each other, my mum and I. I wouldn't say we had a great relationship; my sister had a much closer relationship to her. We didn't argue or anything, I just found her distant and sometimes disconnected, (which could be annoying) and she probably found me even more so. But she loved me and I loved her, even if it wasn't a close relationship. I left home as soon as I could; I went off to art school when I was 16. Although I did go home occasionally, in my mind I'd gone.

It might sound harsh, but I’m not sure I valued my mother very much. She was a great cook and a wonderful old-fashioned homemaker. She was kind, thoughtful and loving. I didn't really know who she was when I was younger, I don’t think I valued her till the end of her life. I don’t really know what I thought of her, I just accepted that she was my mum, we got on fine, but it was just not very connected.

I think I was about 50 and my mum was about 80 when she was diagnosed with dementia, She had been showing signs for a couple of years before it got really difficult. But I didn't realise that. I knew nothing about dementia in the way I do now, I didn't understand what I was seeing. My mum was confused and mystified about what was going on around her, and I felt a deep affection for her. She was my mum, and I felt very anxious on her behalf. My father who had been a fabulous doctor, turned out not to deal very well and was challenged by her dementia. She had been a very good looking and attractive younger person when he married her. But now she was someone who wet the bed every night and couldn't remember a thing from one minute to the next. It made him very frustrated and inpatient. That was very difficult for my mum. Obviously, she wasn't doing it deliberately but because her brain was damaged.

I saw her as an older person who was very frail, I saw how lonely she was and how challenging everything was, I would help anybody in that situation. I wouldn't want anyone to be in that situation, least of all my mum or my dad. I became more involved in her care. My dad had old-fashioned ideas about dementia and how you should look after people, which we would argue about. He wasn't coping well himself, he was in his mid 80s; he said he couldn’t do it anymore. My mum needed to be better looked after, she went to live in a care home but then after a couple of years my dad died quite suddenly, and she was left on her own. We moved her to a care home closer to us in London. As her dementia deepened I got to know her and our relationship grew and developed at the same time.

Emotionally it was tough. Seeing the person lose their cognitive ability and seeing a person treated in a way that way that might be inappropriate, condescending or patronising – or even just plain cruel, is something that I have real issues around. I wanted her to be valued, to feel secure and safe, to feel significant. She had brought up four children; she had been a fantastic wife to our father. I wanted her to feel there was some purpose to her life, that she could feel that she had some continuity in her life, because these are such important things. I didn't feel that she was really being offered that by the circumstances she was living with at the time. I wanted to make up for that and embellish her life.

After my father died and she moved to the care home in London, I was worried she would feel completely marooned. We chose a care home and decorated the room with lots of her things from home – furniture, furnishings, pictures, ornaments, even her old, handmade bed cover, so she would have reminders of who she was and the place she had created herself and had come from.

Unfortunately, after a couple of years and an ‘incident’ in which she was found in the local newsagent, the home said they couldn’t care for her anymore. As her children, we were devastated – she had been so happy there. The third home she went to was a dedicated dementia unit. They were kind and did their best, but her condition was deteriorating and it never quite delivered the same for her or us.

I wanted Mum to feel she was a real person with rich life experiences, despite the dementia, all the way through to the end of her life. I had made up a pictorial album about her life story in chronological order with pictures of her as a little girl, growing up, getting married, having children, grandchildren and great grandchildren – her history. Big captions on each page, like 'this is me dancing', 'this is me with Jack and Ted', gave her a way to explain who she was to people who didn't know anything about her – and perhaps to herself as well. It played an important part in her care and we often looked at it together.


Two or three days before she died, we looked at it together. By now, she was bed-bound. She could not speak anymore, her swallow mechanism had failed and she had pneumonia. She was very ill and dying. But I was able to talk to her about the pictures and describe them for her to remind her of her life, “here you are with dad standing in the doorway of the church getting married and looking so happy,” “here you are in a funny ballet dress, dancing in the garden” and so on. After we had looked at it together I put it gently on her stomach. She wrapped her hands around it and gazed at me with real meaning in her eyes. In a way, it was as though she was saying 'that's me and it’s mine’. It was very moving and a very important moment because I knew finally, through my interest in her, we had found each other.

Welcome!

Hello and welcome to the project 'I'll Always Be My Mother's Daughter', this is a blog that aims to raise awareness around the impact dementia has on relationships. 

The Alzheimer's society have recently published that there are around 850,000 people in the UK with Dementia, two thirds of which are female. 

Many features in the past have highlighted and focused on the 'challenging behavior' associated with someone who is living with Dementia, however this feature is set to turn the tables.

'I'll Always Be My Mother's Daughter' is a Multimedia Project that will focus heavily on the impact dementia has on the mother and daughter relationship in hand, and dig deep into the many obstacles they face as the disease develops. 

This project aims to inspire and inform the readers about the stories of real women. Along the journey this blog will keep you updated and tell you the story of different mother and daughter's.

We are currently seeking mother and daughter case studies and experts in the field of dementia and Alzheimer, please get in touch if you could help. 

You can also follow the project on twitter - @Dementia_MMP