I suspect I'm not the only one who is having to deal with a loved one's dementia from a distance and who doesn't have any siblings or other rellies living nearby to help out. It would be nice to get to know a few of you as our experiences of dealing with this disease are a bit different from those who are caring at closer quarters.
So far I've been lucky in that my mum (82) lives on a 'park home' site (that's the posher name for "mobile home")and they all seem to look out for each other and help each other with odd jobs or lifts etc. I've also been lucky with the level of support I've had from the mental health team. I haven't been told officially what stage mum is at but I suspect from what I've read that she's around 4 or 5. She is aware she has a problem (mixed dementia) but doesn't want others to know about the 'AD' bit. The team are happy for her to continue living on her own atpresent with some help from them and the neighbours. They'd like her to have someone go in daily in the evening to ensure she's had her Reminyl and to see if she has any particular worries. She hasn't agreed to that yet.
She still pops into town 2-3 times a week and has taken (so she tells me) to eating at a pub. I hope she does as at least I know she'll be having 2-3 good meals a week. She's lost a lot of weight although reckons she's the same as she was when she married!! Hmmm - so you can stay the same weight and magically drop a couple of dress sizes can you? M&S microwaveable ready meals (expensive but reasonably good quality)have become a favourite source of food.
Apart from weekly phone calls, as I've mentioned in previous posts, we used to see mum only 2-3 times a year because hubby and I both run our own businesses and we have 2 boys (now aged 15 next month and 18 in Aug)to care for. Mum would come to us on the bus but this would now be impossible, even if someone could see her onto the bus her end, as it involves a change in Bristol. She lives a min. 3hr car ride away (on a good day)so popping up to see her for the day is not really feasible, and neither is all of us going up to see her. So now I go on my own about every 6 weeks (Fri, Sat and Sun am) and the rest of my family haven't seen her since I got her down for Christmas. When I go I haven't got time for the softly, softly approach - there's too much to do. I attacked the wardrobes (dirty clothes put back, manky old stuff and outsized stuff sorted, washed, thrown away. Mum insists a skirt is ok - try it on - oops, why's it fallen down? As for bras, don't even go there!! She's never been a 38C in her life so where did that one come from? There there's the kitchen (11 saucepans, lost count of the baking trays - sadly no more homemade cakes to look forward to). Mum gets upset and tearful - "You shouldn't have to come up here and do that. I can do it next week". I'm sure you've heard it all before.
As for other family members, dad died 15 years ago, her brother died last Sept, her half-sister is 90, in warden controlled accom (but should be in a nursing home as she too has dementia - worse than mum - and is now on anti-depressants)and is deaf so mum can't phone her. The youngest brother-in-law's funeral was last week and the remaining one offered to take mum back with them from the funeral but I thought it would be a bit too much as she'd been a bit agitated since Roy had died (which coincided with her Reminyl dose being doubled). Mum's niece and her husband have offered to have mum for a few days so they can take her down to see her sister, but again this is too close to the funeral so I suggested she goes down later in the summer as they're due to move in a few weeks. So it's not a massive family but at least the others have prior experience with dementia so know what to expect from her.
Meanwhile when I phone our conversations are very limited and repetitive (which, to be honest, makes me reluctant to phone every day), and she assures me all is well but she just occassionally!! loses things. She'll insist there's been no problem with the various detectors that have been fitted; of course she ALWAYS has a main meal every day; and there's no need for me to pop up whenever she has an appointment with the consultant as she has a car ordered to take her (which is true - like I said, good services). Then I phone her friend - "oooh I've had to go down 3 sunday's in a row because the alarm has gone off and the control centre phoned me. She keeps going to the shops. We had to take her back indoors to change when we went to the dance because her skirt fell down. She's very untidy now isn't she." etc etc etc. When I speak to the OT about the alarm it turns out it hasn't gone off quite as many times as her friend has told me. Then I hear from her other main friend that he'd overheard the first one talking about mum to others on the site - and now these 2 friends aren't talking to each other!!! Mum of course believes they're all talking about her anyway and gets annoyed. So that starts me thinking - who do I trust? I suspect the first one does have a bit of a gossip and when mum gets worse I doubt very much that she'll be much help. The other is very helpful and has been through all this with his wife (now dead), but it's not easy for me to phone him as he is a bit deaf and doesn't like talking on the phone! You could probably turn all that into a soap opera!
So that's my current situation. Next visit mid-May for consultant's appointment - orig booked for 12th but saw the OT last week (went up for the funeral) and said Monday's aren't good for me; 3 days later got a letter changing it to the Friday, a day I suggested was good for me (er, sorry if that makes some of you are feel a bit jealous about my support team). I know my real problems are going to start when they consider mum is a danger to herself and/or others and can't live there anymore. Living with us isn't an option - she always said she'd never do that to us as we'd had my dad's parents, who were both invalids, with us for about 20 years. As we both work she'd be on her own in unfamiliar surroundings with no friends in the area, so that's not an option. If she stays in her current area I suspect that visits from friends would decline rapidly as her condition worsens, but I think it would be better initially for her to stay in her area at least until she gets to the stage when she doesn't recognise anyone. After that I think I'd move her to our area. As a chiropodist I already know some of the residential/nursing homes in the area and there is a good one in our village which would be my first choice - it's residential though so they can only take a certain number of dementia cases and only providing they don't need a lot of nursing care.
Well I think that's enough of my rambling for now. I'd be really interested to hear from others in this situation to see what your thoughts are on long term care and strategies for coping with the emotional, social and, not to mention, financial costs of long-distance caring. My main coping strategy seems to be humour (I'm keeping a record of 'mum's little foibles').
Wishing you all well and realising that my problems are nowhere near as bad as some of those I've been reading on TP - yet!
Chris
p.s I just previewed this post and must apologise for the length. I do suffer from verbal diarhea (?wrong spelling - can't be bothered to look it up at 1 am)
So far I've been lucky in that my mum (82) lives on a 'park home' site (that's the posher name for "mobile home")and they all seem to look out for each other and help each other with odd jobs or lifts etc. I've also been lucky with the level of support I've had from the mental health team. I haven't been told officially what stage mum is at but I suspect from what I've read that she's around 4 or 5. She is aware she has a problem (mixed dementia) but doesn't want others to know about the 'AD' bit. The team are happy for her to continue living on her own atpresent with some help from them and the neighbours. They'd like her to have someone go in daily in the evening to ensure she's had her Reminyl and to see if she has any particular worries. She hasn't agreed to that yet.
She still pops into town 2-3 times a week and has taken (so she tells me) to eating at a pub. I hope she does as at least I know she'll be having 2-3 good meals a week. She's lost a lot of weight although reckons she's the same as she was when she married!! Hmmm - so you can stay the same weight and magically drop a couple of dress sizes can you? M&S microwaveable ready meals (expensive but reasonably good quality)have become a favourite source of food.
Apart from weekly phone calls, as I've mentioned in previous posts, we used to see mum only 2-3 times a year because hubby and I both run our own businesses and we have 2 boys (now aged 15 next month and 18 in Aug)to care for. Mum would come to us on the bus but this would now be impossible, even if someone could see her onto the bus her end, as it involves a change in Bristol. She lives a min. 3hr car ride away (on a good day)so popping up to see her for the day is not really feasible, and neither is all of us going up to see her. So now I go on my own about every 6 weeks (Fri, Sat and Sun am) and the rest of my family haven't seen her since I got her down for Christmas. When I go I haven't got time for the softly, softly approach - there's too much to do. I attacked the wardrobes (dirty clothes put back, manky old stuff and outsized stuff sorted, washed, thrown away. Mum insists a skirt is ok - try it on - oops, why's it fallen down? As for bras, don't even go there!! She's never been a 38C in her life so where did that one come from? There there's the kitchen (11 saucepans, lost count of the baking trays - sadly no more homemade cakes to look forward to). Mum gets upset and tearful - "You shouldn't have to come up here and do that. I can do it next week". I'm sure you've heard it all before.
As for other family members, dad died 15 years ago, her brother died last Sept, her half-sister is 90, in warden controlled accom (but should be in a nursing home as she too has dementia - worse than mum - and is now on anti-depressants)and is deaf so mum can't phone her. The youngest brother-in-law's funeral was last week and the remaining one offered to take mum back with them from the funeral but I thought it would be a bit too much as she'd been a bit agitated since Roy had died (which coincided with her Reminyl dose being doubled). Mum's niece and her husband have offered to have mum for a few days so they can take her down to see her sister, but again this is too close to the funeral so I suggested she goes down later in the summer as they're due to move in a few weeks. So it's not a massive family but at least the others have prior experience with dementia so know what to expect from her.
Meanwhile when I phone our conversations are very limited and repetitive (which, to be honest, makes me reluctant to phone every day), and she assures me all is well but she just occassionally!! loses things. She'll insist there's been no problem with the various detectors that have been fitted; of course she ALWAYS has a main meal every day; and there's no need for me to pop up whenever she has an appointment with the consultant as she has a car ordered to take her (which is true - like I said, good services). Then I phone her friend - "oooh I've had to go down 3 sunday's in a row because the alarm has gone off and the control centre phoned me. She keeps going to the shops. We had to take her back indoors to change when we went to the dance because her skirt fell down. She's very untidy now isn't she." etc etc etc. When I speak to the OT about the alarm it turns out it hasn't gone off quite as many times as her friend has told me. Then I hear from her other main friend that he'd overheard the first one talking about mum to others on the site - and now these 2 friends aren't talking to each other!!! Mum of course believes they're all talking about her anyway and gets annoyed. So that starts me thinking - who do I trust? I suspect the first one does have a bit of a gossip and when mum gets worse I doubt very much that she'll be much help. The other is very helpful and has been through all this with his wife (now dead), but it's not easy for me to phone him as he is a bit deaf and doesn't like talking on the phone! You could probably turn all that into a soap opera!
So that's my current situation. Next visit mid-May for consultant's appointment - orig booked for 12th but saw the OT last week (went up for the funeral) and said Monday's aren't good for me; 3 days later got a letter changing it to the Friday, a day I suggested was good for me (er, sorry if that makes some of you are feel a bit jealous about my support team). I know my real problems are going to start when they consider mum is a danger to herself and/or others and can't live there anymore. Living with us isn't an option - she always said she'd never do that to us as we'd had my dad's parents, who were both invalids, with us for about 20 years. As we both work she'd be on her own in unfamiliar surroundings with no friends in the area, so that's not an option. If she stays in her current area I suspect that visits from friends would decline rapidly as her condition worsens, but I think it would be better initially for her to stay in her area at least until she gets to the stage when she doesn't recognise anyone. After that I think I'd move her to our area. As a chiropodist I already know some of the residential/nursing homes in the area and there is a good one in our village which would be my first choice - it's residential though so they can only take a certain number of dementia cases and only providing they don't need a lot of nursing care.
Well I think that's enough of my rambling for now. I'd be really interested to hear from others in this situation to see what your thoughts are on long term care and strategies for coping with the emotional, social and, not to mention, financial costs of long-distance caring. My main coping strategy seems to be humour (I'm keeping a record of 'mum's little foibles').
Wishing you all well and realising that my problems are nowhere near as bad as some of those I've been reading on TP - yet!
Chris
p.s I just previewed this post and must apologise for the length. I do suffer from verbal diarhea (?wrong spelling - can't be bothered to look it up at 1 am)