Hi everyone. Where to start.....that's the question?
My name's Martin and I'm 45, married with two girls (14 and 10). My Dad was diagnosed with Alzheimer's around 6 years ago. Close family had noticed gradual changes in his behaviour and small, but noticable (sometimes dangerous) errors of judgement were creeping into everyday life.
Once diagnosed, progression of the disease has been fairly gradual in my opinion; that is up until the last 12 months.
A little bit of background: Dad is now 81. Mum is 9 years younger and has always been young for her age. I'm one of three brothers. I live in Essex - moved here 13 years ago - whereas the rest of my family live in the West Midlands.
Mum has always tended to confide in me more than the others. It's just the way it is and has always been. So I've tended to hear of the difficulties and issues first hand whereas at times, my brothers have relied on me to ensure they're kept up to date.
I have tried to step in from time to time, suggesting Mum seek support of qualified nurses or carers, as even from a distance, I notice how her mood and quality of life are being affected. In the Summer, they went on holiday with friends but barely emerged from the hotel room as Dad didn't feel able to leave the room and was doubly incontinent on a few occasions. It was no holiday for them at all.
Me and my family were on holiday at the same time, cruelly cut short after only 3 days by the death of my Mother-in-law. So we came home early and in between assisting with funeral arrangements and generally coming to terms with our loss, I spoke with Mum's surgery and arranged for an Alzheimer's nurse to contact Mum when she came back off holiday with a view to calling in to see her and assess the situation.
Well, Mum being Mum - very proud, very loyal to her vows ('til death do us part)- was scared that the nurses intervention would take Dad away and that Dad wouldn't survive without seeing her. Mum only has to leave the room for a minute or two and Dad goes in search for the comfort of seeing she's still there; notwithstanding the fact that most mornings now, when he wakes he thinks he's in a Guest House, doesn't even recognise Mum and asks where his Mum and Dad are.
So months passed by with Mum having only spoken with the Nurse over the phone, refusing immediate support but wanting to see how things progressed now they were back home. Still the calls to me continued when she was down or upset with something and I've increasingly been put on the phone to provide support by reassuring Dad over certain concerns he might have at any one time, over where he is and simple things that most of us take for granted.
I had arranged to drive up to collect Mum and Dad for Christmas so that Mum in particular could put her feet up for a week and I could do my bit. But leading up to Christmas, Dad's incontinence got worse and seeking advice from the GP, Mum decided it wasn't wise to take him out of his surroundings and she didn't want their grandchildren to see Grandad lose control of his bladder or bowels. However, on the plus side she finally agreed that she needed help and she saw the Alzheimer's nurse at the beginning of December, agreeing that it would be best if Dad spent a few hours, 3 times a week, in special care facilities so that he could engage more with others and affording Mum some respite.
So instead of bringing them down to Essex for Christmas, we arranged to drive up to them and stay in a local hotel so as not to put extra pressure on Mum and confuse Dad in terms of who these other people are in his house. But the weather scuppered our plans and I've been unable to get up there due to work and other issues since.
From time to time, the anxious calls from Mum come through and we're now well into the second half of January and there hasn't been any contact from the Nurse. I appreciate they must be really busy but I think it's become rather urgent for Mum and she needs professional support now - a legacy of leaving it so late to seek help. I worry about her health because if anything happens to Mum due to the stressful situation, Dad will be lost without her.
And all the time, I feel guilt for moving away all those years ago and not being able to be on their doorstep within ten minutes. Mum mentions it sometimes in bitter moments - she has 3 sons and even those close don't or are unable to do much. Both work - one very long hours; the other doesn't drive and can't be available to help as one might expect.
Tonight, Mum called me sounding very distressed. They were going next door to have a quiet get together in celebration of a neighbour's birthday. Neighbours have been great for Mum and included both her and Dad in as much as possible. Mum called Dad to go upstairs to use the toilet and get changed. There was no reply and when she went downstairs the front door was open and he was nowhere to be seen.
Thankfully he eventually returned, but when asked where he'd been, he said he had to find a toilet down the road as he was desperate. No-one knows where he's been but Mum's concern is that there were children playing football outside. You can imagine her concern in terms of the perception of others who might be unaware of his condition.
She wanted me to speak with Dad to tell him he can't do that so in the best possible, firm but kind way, I told him he must use the bathroom and can't go to the toilet in public (if indeed that's what he did). But when I spoke to Mum afterwards, she was angry and frustrated that I didn't say more and she could tell by Dad's reaction and response that I wasn't firm enough. To be honest, I don't think it would help if I started ranting down the phone; I don't want to upset Dad or cause a moodswing and also I believe he forgets the content of conversation within seconds of coming off the phone. But this caused Mum to have a go at me and I got annoyed as I thought I'd done as much as I could under the circumstances.
We're close - we always have been and always will be. And although she is sometimes bitter about me not living closer and I am frustrated she didn't seek help earlier, we talked it out and I said I would contact the Nurse to see if respite would be available soon and for a general update.
That was the long way of getting around to the question, which is:
Is there anymore I can do, anyone I can contact for additional support or services to help Mum and Dad other than that the Nurse can provide?
I want to do as much as I can but it's so difficult not having had experience of this cruel disease.
If you've had the patience to read this far, thank you. It helps to get it all down in print; I just hope it makes sense.
Martin
My name's Martin and I'm 45, married with two girls (14 and 10). My Dad was diagnosed with Alzheimer's around 6 years ago. Close family had noticed gradual changes in his behaviour and small, but noticable (sometimes dangerous) errors of judgement were creeping into everyday life.
Once diagnosed, progression of the disease has been fairly gradual in my opinion; that is up until the last 12 months.
A little bit of background: Dad is now 81. Mum is 9 years younger and has always been young for her age. I'm one of three brothers. I live in Essex - moved here 13 years ago - whereas the rest of my family live in the West Midlands.
Mum has always tended to confide in me more than the others. It's just the way it is and has always been. So I've tended to hear of the difficulties and issues first hand whereas at times, my brothers have relied on me to ensure they're kept up to date.
I have tried to step in from time to time, suggesting Mum seek support of qualified nurses or carers, as even from a distance, I notice how her mood and quality of life are being affected. In the Summer, they went on holiday with friends but barely emerged from the hotel room as Dad didn't feel able to leave the room and was doubly incontinent on a few occasions. It was no holiday for them at all.
Me and my family were on holiday at the same time, cruelly cut short after only 3 days by the death of my Mother-in-law. So we came home early and in between assisting with funeral arrangements and generally coming to terms with our loss, I spoke with Mum's surgery and arranged for an Alzheimer's nurse to contact Mum when she came back off holiday with a view to calling in to see her and assess the situation.
Well, Mum being Mum - very proud, very loyal to her vows ('til death do us part)- was scared that the nurses intervention would take Dad away and that Dad wouldn't survive without seeing her. Mum only has to leave the room for a minute or two and Dad goes in search for the comfort of seeing she's still there; notwithstanding the fact that most mornings now, when he wakes he thinks he's in a Guest House, doesn't even recognise Mum and asks where his Mum and Dad are.
So months passed by with Mum having only spoken with the Nurse over the phone, refusing immediate support but wanting to see how things progressed now they were back home. Still the calls to me continued when she was down or upset with something and I've increasingly been put on the phone to provide support by reassuring Dad over certain concerns he might have at any one time, over where he is and simple things that most of us take for granted.
I had arranged to drive up to collect Mum and Dad for Christmas so that Mum in particular could put her feet up for a week and I could do my bit. But leading up to Christmas, Dad's incontinence got worse and seeking advice from the GP, Mum decided it wasn't wise to take him out of his surroundings and she didn't want their grandchildren to see Grandad lose control of his bladder or bowels. However, on the plus side she finally agreed that she needed help and she saw the Alzheimer's nurse at the beginning of December, agreeing that it would be best if Dad spent a few hours, 3 times a week, in special care facilities so that he could engage more with others and affording Mum some respite.
So instead of bringing them down to Essex for Christmas, we arranged to drive up to them and stay in a local hotel so as not to put extra pressure on Mum and confuse Dad in terms of who these other people are in his house. But the weather scuppered our plans and I've been unable to get up there due to work and other issues since.
From time to time, the anxious calls from Mum come through and we're now well into the second half of January and there hasn't been any contact from the Nurse. I appreciate they must be really busy but I think it's become rather urgent for Mum and she needs professional support now - a legacy of leaving it so late to seek help. I worry about her health because if anything happens to Mum due to the stressful situation, Dad will be lost without her.
And all the time, I feel guilt for moving away all those years ago and not being able to be on their doorstep within ten minutes. Mum mentions it sometimes in bitter moments - she has 3 sons and even those close don't or are unable to do much. Both work - one very long hours; the other doesn't drive and can't be available to help as one might expect.
Tonight, Mum called me sounding very distressed. They were going next door to have a quiet get together in celebration of a neighbour's birthday. Neighbours have been great for Mum and included both her and Dad in as much as possible. Mum called Dad to go upstairs to use the toilet and get changed. There was no reply and when she went downstairs the front door was open and he was nowhere to be seen.
Thankfully he eventually returned, but when asked where he'd been, he said he had to find a toilet down the road as he was desperate. No-one knows where he's been but Mum's concern is that there were children playing football outside. You can imagine her concern in terms of the perception of others who might be unaware of his condition.
She wanted me to speak with Dad to tell him he can't do that so in the best possible, firm but kind way, I told him he must use the bathroom and can't go to the toilet in public (if indeed that's what he did). But when I spoke to Mum afterwards, she was angry and frustrated that I didn't say more and she could tell by Dad's reaction and response that I wasn't firm enough. To be honest, I don't think it would help if I started ranting down the phone; I don't want to upset Dad or cause a moodswing and also I believe he forgets the content of conversation within seconds of coming off the phone. But this caused Mum to have a go at me and I got annoyed as I thought I'd done as much as I could under the circumstances.
We're close - we always have been and always will be. And although she is sometimes bitter about me not living closer and I am frustrated she didn't seek help earlier, we talked it out and I said I would contact the Nurse to see if respite would be available soon and for a general update.
That was the long way of getting around to the question, which is:
Is there anymore I can do, anyone I can contact for additional support or services to help Mum and Dad other than that the Nurse can provide?
I want to do as much as I can but it's so difficult not having had experience of this cruel disease.
If you've had the patience to read this far, thank you. It helps to get it all down in print; I just hope it makes sense.
Martin
