My first post here, so hi!
Trying to keep the very long story of how I came to be where I am short... but am desperate to reach out
I'm 38, my mum is 69. She is divorced and I am the only one close to her, both in physical and emotional. For a year or so she was getting a bit more confused than usual, particularly in planning or stress, but she has an underactive thyroid so put it down to a tweak in meds etc.
At Christmas 2019 she was very confused, I persuaded her to come with me to the dr for a blood test, albeit she was doing t to appease me. Just before blood test, dentist calls, mums in there and panicking and in distress as she doesn't have, or remember having a denture plate. She had a week earlier in the dentist, but now has no idea she's had one. I meet her at her home, she has no idea what it looks like, goes rummaging thru old paperwork. I find them for her on coffee table...
Few similar instances, going to bank asking for help with medication, going to coffee shop 3 or 4 times a day like it's the first... blood tests come back - thyroid is under, but not enough to cause this, refer to mental health team. ACE tests done, yes, dementia, unspecified. They advise she lacks mental capacity, and I start working on taking pre-arranged power of attorney.
We get CT, no sign of anything unusual. Lockdown happens, she's on my doorstep 3, 4 or 5 times a day upset... she goes from under dosing to overdosing on thyroid meds, I try a e-dosing box, she ends up in pharmacy in distress as she can't open it. She loses 20+kg in 3 months from forgetting to eat. I took time off work and we try a carer, doesn't work, mum is too confused and upset having someone else in the house, and gets aggressive and terrified, I need to go back to work and not coping emotionally. Things go so rapidly, with guidance from mental health team, mum goes to carehome for respite with potential view to long term. She seems a bit unsure of it, but seems to be settling.
We get MRI... again, nothing, we go to hospital specialist, PET scan shows hypo-metabolism across brain, mostly parietaltemporal lobe, more left then right. Consultant says alzheimers. Makes sense given her difficulties, albeit unusual area of brain to be so affected. That was about 3 weeks ago.
I took a 4 day break away, but ever since the hospital she has been in an almost permanent state of upset at the home. At first that she only had days to live, I go to see her and she says, "I hope you're happy, because I am not" and similar hurtful things. Then a misinterpretation of an activity left her with nightmares, I had a call Saturday night begging and pleading me to come visit her and bring her a jumper, saying she doesn't have a bedroom or bed for the night. They allowed an exceptional brief visit as she refused to do anything without seeing me. Apparently she had been happy and fine that morning. Go there today and she refused to come down to see me (we do window visits on 20 min slots in reception there) because she's scared to leave her room, when nurses eventually persuaded her, she was shaking in terror, but said she didn't know why, not because of me but she was so scared. She was pacing around the foyer, crying and no matter what I did (offer to go outside, listen to music, coffee and cake, reassure her safety, talk about other topics), I couldn't calm her and started to get upset myself because I couldn't hug her. In the end the nurses got her in the lift to go upstairs and I didn't get to say goodbye.
I'm so lost in all of this, every time I think I've done the right thing, or can finally have some of my life back, I'm thrown in to more tears. My other half is so supportive, but he is getting upset out of worry for me and the efforts I am going to (particularly when he knows some family history stuff).
I've got so many questions, and no-where to turn. I've done counselling Jan-May , but it was difficult as my questions and worries were dementia specific. I've called my local advisor, and she pointed me here. After this mornings visit I cried for the 45 mins walk to work feeling so lost.
The plan was to set up her end of life decisions after diagnosis, but there's no way I can do that now?
The care home are trying their best, but everything scares her given the area of her brain interpreting the world isn't working right.
I've still got mountains of her paperwork to go thru, and am gradually sorting and storing possessions in her home to start renting to help with fees longer term.
I'm grieving, I know that, and I feel weird guilt and hurt remembering when my grandmother had dementia, and my mother said she'd rather have her life end early, than have the lack of quality of life and sadness granny had and then I look at mum and it hurts so much.
And for all anyone knows she could be with us for years, but in what state? And will it be years if it keeps being this rapid?
What a ramble, I'm sorry, I just don't know anymore, almost 9 months and I'm scared it will be like this for me for the rest of her life because it never seems to end
LostLiz
Trying to keep the very long story of how I came to be where I am short... but am desperate to reach out
I'm 38, my mum is 69. She is divorced and I am the only one close to her, both in physical and emotional. For a year or so she was getting a bit more confused than usual, particularly in planning or stress, but she has an underactive thyroid so put it down to a tweak in meds etc.
At Christmas 2019 she was very confused, I persuaded her to come with me to the dr for a blood test, albeit she was doing t to appease me. Just before blood test, dentist calls, mums in there and panicking and in distress as she doesn't have, or remember having a denture plate. She had a week earlier in the dentist, but now has no idea she's had one. I meet her at her home, she has no idea what it looks like, goes rummaging thru old paperwork. I find them for her on coffee table...
Few similar instances, going to bank asking for help with medication, going to coffee shop 3 or 4 times a day like it's the first... blood tests come back - thyroid is under, but not enough to cause this, refer to mental health team. ACE tests done, yes, dementia, unspecified. They advise she lacks mental capacity, and I start working on taking pre-arranged power of attorney.
We get CT, no sign of anything unusual. Lockdown happens, she's on my doorstep 3, 4 or 5 times a day upset... she goes from under dosing to overdosing on thyroid meds, I try a e-dosing box, she ends up in pharmacy in distress as she can't open it. She loses 20+kg in 3 months from forgetting to eat. I took time off work and we try a carer, doesn't work, mum is too confused and upset having someone else in the house, and gets aggressive and terrified, I need to go back to work and not coping emotionally. Things go so rapidly, with guidance from mental health team, mum goes to carehome for respite with potential view to long term. She seems a bit unsure of it, but seems to be settling.
We get MRI... again, nothing, we go to hospital specialist, PET scan shows hypo-metabolism across brain, mostly parietaltemporal lobe, more left then right. Consultant says alzheimers. Makes sense given her difficulties, albeit unusual area of brain to be so affected. That was about 3 weeks ago.
I took a 4 day break away, but ever since the hospital she has been in an almost permanent state of upset at the home. At first that she only had days to live, I go to see her and she says, "I hope you're happy, because I am not" and similar hurtful things. Then a misinterpretation of an activity left her with nightmares, I had a call Saturday night begging and pleading me to come visit her and bring her a jumper, saying she doesn't have a bedroom or bed for the night. They allowed an exceptional brief visit as she refused to do anything without seeing me. Apparently she had been happy and fine that morning. Go there today and she refused to come down to see me (we do window visits on 20 min slots in reception there) because she's scared to leave her room, when nurses eventually persuaded her, she was shaking in terror, but said she didn't know why, not because of me but she was so scared. She was pacing around the foyer, crying and no matter what I did (offer to go outside, listen to music, coffee and cake, reassure her safety, talk about other topics), I couldn't calm her and started to get upset myself because I couldn't hug her. In the end the nurses got her in the lift to go upstairs and I didn't get to say goodbye.
I'm so lost in all of this, every time I think I've done the right thing, or can finally have some of my life back, I'm thrown in to more tears. My other half is so supportive, but he is getting upset out of worry for me and the efforts I am going to (particularly when he knows some family history stuff).
I've got so many questions, and no-where to turn. I've done counselling Jan-May , but it was difficult as my questions and worries were dementia specific. I've called my local advisor, and she pointed me here. After this mornings visit I cried for the 45 mins walk to work feeling so lost.
The plan was to set up her end of life decisions after diagnosis, but there's no way I can do that now?
The care home are trying their best, but everything scares her given the area of her brain interpreting the world isn't working right.
I've still got mountains of her paperwork to go thru, and am gradually sorting and storing possessions in her home to start renting to help with fees longer term.
I'm grieving, I know that, and I feel weird guilt and hurt remembering when my grandmother had dementia, and my mother said she'd rather have her life end early, than have the lack of quality of life and sadness granny had and then I look at mum and it hurts so much.
And for all anyone knows she could be with us for years, but in what state? And will it be years if it keeps being this rapid?
What a ramble, I'm sorry, I just don't know anymore, almost 9 months and I'm scared it will be like this for me for the rest of her life because it never seems to end
LostLiz
