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.
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