I have posted here a few times last year.
My Mom was diagnosed with some sort of dementia round about this time last year (onset estimated 5 years before). We were never sure quite what kind because she thought nothing was wrong and therefore wouldn't consent to any brain imaging.
Memory tests came back that it could be Alzheimers or FTD. I was firmly on the side of it being FTD but a slightly later onset beginning in her 70's. Whatever it was she had significant problems with self awareness, reasoning about her own health, apathy and personal care. She had forgotten how to do things, wash, dress, change clothes make a cup of tea, making phone calls or at least needed help with initiating these tasks.
She had developed some odd repetitive behaviours, weeing in a jug, picking her hands, often with sharp objects, she had to have a mint in her mouth constantly and recently she had gone from smoking 20 to 60 or 70 a day.
She was only just becoming classically forgetful and she had no awareness of it and she was still pretty lucid to talk to and was still pretty handy at mental arithmetic and doing crosswords and using her iPad. She absolutely refused to go out except if she ran out of ciggarettes and really preferred being on her own.
I'm only 35 and have a pre school age daughter and a job and a life 100 miles away from my Mom. My Dad is already gone and I have no siblings.
About 8 weeks ago my mothers carers couldn't get anyone to answer the door in the morning (We have the ring online doorbell system at my house that alerts me on my phone) so I knew immediately that there was a problem. The keys in the keybox wouldn't work because Mom had left the keys in the other side of the door. We had to get the police to break in.
Mom had passed away in her chair. No one knew anything was wrong. She had been out in the afternoon trying to walk to the shops to get cigarettes but the neighbour ran after her and went and got the cigarettes for her. I saw her on the video camera going out and she just looked as she ever did. Her carer in the evening knew her really well and didn't spot anything, Mom had got up and let that carer out and locked the door behind her then had sat down and had fallen asleep and died before she had eaten the dinner the carer had made for her.
I was due to see her that weekend as she was starting to run low on meals but my daughter had chicken pox so I decided to stay away until the Tuesday.
The post mortem had come back saying she had pneumonia, nobody knew. Even if I had visited that weekend I wouldn't have been able to spot it. A rattly chest on someone who has mild COPD and smokes 60 a day and has little to no self awareness!? You just wouldn't know, she didn't even.
There is so much to be thankful for in this, that she was at home and that she still had some independence and we didn't have to sell her house.
But I still feel so lost, practically she was a big focus for me, I was up and down the motorway, filling her fridge, ordering her shopping and her medications. We had agreed this year in the spring we would start moving her house around so she could have a propper bed in her living room. I was so focussed on keeping her at home while we could. And at the end of the day she was my Mom.
Thank god we got the diagnosis when we did so I spent so much more time with her in the last year, I thought I had done something wrong because she was so distant in the previous 5 years. In the last year I just turned up, I didn't give her chance to keep me away. She seemed disinterested when my daughter was born and I was so sad because I thought I had done something wrong.
We tried twice to get her help since the dementia started but both times she was treated for depression due to her history and they just cranked her drugs up with little or no effect. It was only this time when I stood up to her doctors and suggested I thought it was front brain dementia that they started to investigate her memory beyond the MMSE which she always did OK on and found the extent of her difficulties.
I don't know why I'm writing all of this and I know many of you will have been gone through years and years of caring for loved ones which will have been much more harrowing than this. That is what I was preparing myself for and then, she was just gone without a whimper and now everything feels wrong.
Thanks for reading.
H
x
My Mom was diagnosed with some sort of dementia round about this time last year (onset estimated 5 years before). We were never sure quite what kind because she thought nothing was wrong and therefore wouldn't consent to any brain imaging.
Memory tests came back that it could be Alzheimers or FTD. I was firmly on the side of it being FTD but a slightly later onset beginning in her 70's. Whatever it was she had significant problems with self awareness, reasoning about her own health, apathy and personal care. She had forgotten how to do things, wash, dress, change clothes make a cup of tea, making phone calls or at least needed help with initiating these tasks.
She had developed some odd repetitive behaviours, weeing in a jug, picking her hands, often with sharp objects, she had to have a mint in her mouth constantly and recently she had gone from smoking 20 to 60 or 70 a day.
She was only just becoming classically forgetful and she had no awareness of it and she was still pretty lucid to talk to and was still pretty handy at mental arithmetic and doing crosswords and using her iPad. She absolutely refused to go out except if she ran out of ciggarettes and really preferred being on her own.
I'm only 35 and have a pre school age daughter and a job and a life 100 miles away from my Mom. My Dad is already gone and I have no siblings.
About 8 weeks ago my mothers carers couldn't get anyone to answer the door in the morning (We have the ring online doorbell system at my house that alerts me on my phone) so I knew immediately that there was a problem. The keys in the keybox wouldn't work because Mom had left the keys in the other side of the door. We had to get the police to break in.
Mom had passed away in her chair. No one knew anything was wrong. She had been out in the afternoon trying to walk to the shops to get cigarettes but the neighbour ran after her and went and got the cigarettes for her. I saw her on the video camera going out and she just looked as she ever did. Her carer in the evening knew her really well and didn't spot anything, Mom had got up and let that carer out and locked the door behind her then had sat down and had fallen asleep and died before she had eaten the dinner the carer had made for her.
I was due to see her that weekend as she was starting to run low on meals but my daughter had chicken pox so I decided to stay away until the Tuesday.
The post mortem had come back saying she had pneumonia, nobody knew. Even if I had visited that weekend I wouldn't have been able to spot it. A rattly chest on someone who has mild COPD and smokes 60 a day and has little to no self awareness!? You just wouldn't know, she didn't even.
There is so much to be thankful for in this, that she was at home and that she still had some independence and we didn't have to sell her house.
But I still feel so lost, practically she was a big focus for me, I was up and down the motorway, filling her fridge, ordering her shopping and her medications. We had agreed this year in the spring we would start moving her house around so she could have a propper bed in her living room. I was so focussed on keeping her at home while we could. And at the end of the day she was my Mom.
Thank god we got the diagnosis when we did so I spent so much more time with her in the last year, I thought I had done something wrong because she was so distant in the previous 5 years. In the last year I just turned up, I didn't give her chance to keep me away. She seemed disinterested when my daughter was born and I was so sad because I thought I had done something wrong.
We tried twice to get her help since the dementia started but both times she was treated for depression due to her history and they just cranked her drugs up with little or no effect. It was only this time when I stood up to her doctors and suggested I thought it was front brain dementia that they started to investigate her memory beyond the MMSE which she always did OK on and found the extent of her difficulties.
I don't know why I'm writing all of this and I know many of you will have been gone through years and years of caring for loved ones which will have been much more harrowing than this. That is what I was preparing myself for and then, she was just gone without a whimper and now everything feels wrong.
Thanks for reading.
H
x
