Hi all, I am new to the forum.. Dad is 82 and has mid+ dementia. He wants to go home all the time and does a lot of packing. He knows I am his pal, but doesn't think he has a daughter. He has no short term memory at all. My mum, also 82 is his main carer. I live local to them so try to help as best I can. My mum is starting to really struggle, but is being a martrr when I suggest any additional help/day care etc. She is angry with him a lot of the time, and I think this unsettles him. We are struggling to get him to have a shower, and when the last doctor who came round - Dad had a fist made readt to punch him, as there is 'nothing wrong with him'. So we are in a bit of a pickle. I've read some books, and lots of help sheets, but as an only child I suppose I am travelling a bit of a lonely road, and don't want to bore all I see...So its you I have offloaded to. Thanks already, and any suggestons, advice would be most welcome. Cheers T
New to the forum, Struggling with the whole Dad with dementia thing........
- Thread starter TaraP
- Start date
Welcome Tara,
I am still finding my way and have gained a lot of help and advice from this forum. The basics include getting power of attorney sorted, getting Attendance allowance, blue badges etc. Get into online banking - you can do all sorts much more quickly. Calmly insist on help for your Mum - get social services involved. I've had a carers assessment today which has pointed out more help and support that is out there, you have to make the phonecalls but once you do there are people who can help.
Keep in touch even if it is just to offload!
I am still finding my way and have gained a lot of help and advice from this forum. The basics include getting power of attorney sorted, getting Attendance allowance, blue badges etc. Get into online banking - you can do all sorts much more quickly. Calmly insist on help for your Mum - get social services involved. I've had a carers assessment today which has pointed out more help and support that is out there, you have to make the phonecalls but once you do there are people who can help.
Keep in touch even if it is just to offload!
Hi Tara and welcome to TP. I hope you find it useful, supportive and a place to find friends who are travelling the same path. We are all at different stages, all out loved ones are different but the effect it has on carers and families is pretty much the same. It's a horrid disease!
Has your dad had a formal diagnosis? If so does he have a community psychiatrist or a community psychiatric nurse? If so can you contact either of these to get some advice? If not it may be worth ringing the Community Mental Health Team (Older People) for your area and have a chat. See if a CPN can pop out. they also work cloaely with social services. i too would ring social services and ask for a carers assesent as afore mentioned.
Where we live we have such things as Admiral Nurses, they are few and far between but it may be worth enquiring as to whether they operate in your area. They are basically qualifies psychiatric nurses who provide help and support for the carer. Dads AN would go in and chat to him whilst I took mum out. It was nice as dad could off load and not be worried about showing emotions or his true feelings. I know he wouldn't open up to me so she was an absolute god send. Its well worth looking into, the Community Psychiatric Nurse or anyone from the Mental Health Team would be able to tell you of they have admiral nurses.
The only other thing is would maybe ask of either the CPN or SW is if there are any clubs that operate in your area. We have one called The Phoenix Club (could never enter without thinking of Peter Kay and Phoenix Nights!) it was run by psychiatric nurses and was somewhere for carers and sufferers to go. They had sandwiches and hot drinks, games like dominos and word games for those who wanted to join in, One mans and his piano all sorts. They also did day trips and meals out. It was lovely as everyone was in the same position, a carer and a sufferer. They had people go in and do talks, there was information galore regarding AD and dementia, benefits, befriending services everything you could want. Most of all though it was a day out for dad and lots of other people on hand to watch out, inadvertently for mum. Somewhere like that if mum and dad would go may provide a bit of respite for mum. They will both still be together but it's out of the home environment and mum would have others to swap stories with.
I hope you manage to get in touch with someone tomorrow that can offer some help. Keep posting.
Sharon
Has your dad had a formal diagnosis? If so does he have a community psychiatrist or a community psychiatric nurse? If so can you contact either of these to get some advice? If not it may be worth ringing the Community Mental Health Team (Older People) for your area and have a chat. See if a CPN can pop out. they also work cloaely with social services. i too would ring social services and ask for a carers assesent as afore mentioned.
Where we live we have such things as Admiral Nurses, they are few and far between but it may be worth enquiring as to whether they operate in your area. They are basically qualifies psychiatric nurses who provide help and support for the carer. Dads AN would go in and chat to him whilst I took mum out. It was nice as dad could off load and not be worried about showing emotions or his true feelings. I know he wouldn't open up to me so she was an absolute god send. Its well worth looking into, the Community Psychiatric Nurse or anyone from the Mental Health Team would be able to tell you of they have admiral nurses.
The only other thing is would maybe ask of either the CPN or SW is if there are any clubs that operate in your area. We have one called The Phoenix Club (could never enter without thinking of Peter Kay and Phoenix Nights!) it was run by psychiatric nurses and was somewhere for carers and sufferers to go. They had sandwiches and hot drinks, games like dominos and word games for those who wanted to join in, One mans and his piano all sorts. They also did day trips and meals out. It was lovely as everyone was in the same position, a carer and a sufferer. They had people go in and do talks, there was information galore regarding AD and dementia, benefits, befriending services everything you could want. Most of all though it was a day out for dad and lots of other people on hand to watch out, inadvertently for mum. Somewhere like that if mum and dad would go may provide a bit of respite for mum. They will both still be together but it's out of the home environment and mum would have others to swap stories with.
I hope you manage to get in touch with someone tomorrow that can offer some help. Keep posting.
Sharon
Hi Sharon,
Welcome to the forum...... isn't it amazing to come to a place and be able to 'belong' instantly? Of course we would prefer not to have to be here, but now, I wouldn't be without these lovely people for all the tea in China.
I can imagine that it must feel a lonely furrow you are ploughing, being an only child and living at home. I am lucky in that I have a husband who is a better carer than I am, and right now our two young adult kids are home too.
I well understand how your Mum feels angry at dementia. I can categorically say that I have dementia too, it does make me angry, and I have to constantly remind myself to look for Mum in all the dementia muddle. And then when I find her, that hurts too, so much. So whatever I do, it hurts.
Help is something one can't get enough of. Mum is severe (stage 6 now) and she has just come to the stage where she will accept the help of others - big relief. Somehow the heavens have smiled on us as our two neighbours are so supportive of Mum and really like her. People help out for the strangest of reasons: neighbour below our garden (we live in France) has a mother with Alz and lives too far away to visit her much, so she loves to help out with Mum. Mum likes the changes as she gets lots of attention from both neighbours.
I understand your Mum but as dementia only gets more challenging, it is wise to pick one's support team early on. Get them trained to the job, so to speak. I know that having outsiders in the house can feel like an invasion and loss of privacy, but it is in our best interestes and in the interests of the caree too.
Keep posting, and maybe your Mum would benefit from reading a few posts too! Hugs, BE
Welcome to the forum...... isn't it amazing to come to a place and be able to 'belong' instantly? Of course we would prefer not to have to be here, but now, I wouldn't be without these lovely people for all the tea in China.
I can imagine that it must feel a lonely furrow you are ploughing, being an only child and living at home. I am lucky in that I have a husband who is a better carer than I am, and right now our two young adult kids are home too.
I well understand how your Mum feels angry at dementia. I can categorically say that I have dementia too, it does make me angry, and I have to constantly remind myself to look for Mum in all the dementia muddle. And then when I find her, that hurts too, so much. So whatever I do, it hurts.
Help is something one can't get enough of. Mum is severe (stage 6 now) and she has just come to the stage where she will accept the help of others - big relief. Somehow the heavens have smiled on us as our two neighbours are so supportive of Mum and really like her. People help out for the strangest of reasons: neighbour below our garden (we live in France) has a mother with Alz and lives too far away to visit her much, so she loves to help out with Mum. Mum likes the changes as she gets lots of attention from both neighbours.
I understand your Mum but as dementia only gets more challenging, it is wise to pick one's support team early on. Get them trained to the job, so to speak. I know that having outsiders in the house can feel like an invasion and loss of privacy, but it is in our best interestes and in the interests of the caree too.
Keep posting, and maybe your Mum would benefit from reading a few posts too! Hugs, BE
Seeking help
Hi everyone .I live next door to mum and dad and dad has mixed type dementia; moderate. I agree with getting a support network early on as we haven't!!!!! We cope amongst the family and mum and dad are rarely on their own. The problem is mum is becoming by frail and will not accept external help. My daughter is getting married in August and we are all (excluding mum and dad as it is a hen/stag weekend) going away for the weekend. There is only my elderly aunt who lives next door who we also support who is around. I have tried everything to secure more support but it is still refused. The problem is dad has started having lots of falls and without the family network he cannot get up again. We have had lots of A and E visits!!! I can foresee disaster before we even arrive at our destination. Should I insist we get someone to stay with them? There have been offers of help. I am also really run down as I have a demanding job but am still bathing dad, cooking for them and doing everything that a good daughter should because I love them dearly....HELP Please
Hi everyone .I live next door to mum and dad and dad has mixed type dementia; moderate. I agree with getting a support network early on as we haven't!!!!! We cope amongst the family and mum and dad are rarely on their own. The problem is mum is becoming by frail and will not accept external help. My daughter is getting married in August and we are all (excluding mum and dad as it is a hen/stag weekend) going away for the weekend. There is only my elderly aunt who lives next door who we also support who is around. I have tried everything to secure more support but it is still refused. The problem is dad has started having lots of falls and without the family network he cannot get up again. We have had lots of A and E visits!!! I can foresee disaster before we even arrive at our destination. Should I insist we get someone to stay with them? There have been offers of help. I am also really run down as I have a demanding job but am still bathing dad, cooking for them and doing everything that a good daughter should because I love them dearly....HELP Please
Ring the Alzheimer's Society, Carers uk, Age concern. Telephone everyone. I looked on the internet like a manic woman to get some help. I have done that and have found help out there. Sometimes it may be just a small help but call them because they will then tell you of other things out there in your area
Make copious notes as I got muddled with who said what so now I take notes on everything and phone numbers of anyone who will give me some help with my MIL
Make copious notes as I got muddled with who said what so now I take notes on everything and phone numbers of anyone who will give me some help with my MIL
Hi tara,
Welcome to the forum.
So much of what you say echoes our own situation from a bit further back in our journey. Dad has AD, he is 86, Mum is 82 and his main carer, I am 15 mins away, and my sister is much younger with a toddler, works part time, and lives an hour away, while my children are grown up and working.
Going home can be a very strong urge for many people with dementia. I can only think that it is looking for security, a place and time when everything felt safe and easy to cope. When your mind struggles to explain what you are seeing and feeling, and reason starts to crumble, we can't rationalise and we are left with the raw emotions. Dad was always wanting to go home too, sometimes he stomped through the house yelling out that Mum was locking him up in this jail and not letting him do anything. He is now far more passive and has mobility issues, but he will still get sad and say he is a terrible person because he hasn't spoken to his mum and told her where he is, or he needs to be getting on. Other times he would say he hadn't seen his "people" and where were they? Our family is always around him, but of course his parents passed over 60 years ago and his siblings are gone too. But the urge to connect with that time is still there. Time is such an enemy and so fluid, he has no concept of his own age, he calls Mum, myself and my sister Mama and even though I say I am his daughter, he just smiles, says yes, I love you Mama.
I agree, get onto all the help you can, I must say it wasn't until Mum became very ill last year with pneumonia that I forced the issue with getting her to accept help. We all would feel the same about having strangers coming in and doing the things we have managed on our own. If Mum didn't have Dad to care for she would be perfectly able to cook, wash, look after the home, etc, but not when he is requiring 24 hr care.
Mum was very resistant to someone strange coming in to help but I forced the issue and said give it a try, it can't hurt. She relented and we had an assessment done, we are in Australia so different system to UK. Dad was approved for a care package and an agency contacted Mum to come and visit. The lady was so lovely and all the people who have come in are also just lovely. Mum was so doubting, especially since she is so particular but the lady who does the cleaning is brilliant. Mum would adopt her if she could
Other ones have come to do some of Dad's showers and also for little bits of respite and they have all been so good. It may be the luck of the draw, but it isn't always a disaster.
I say this because it is just the idea of someone else coming in that is difficult at first, but if you can just get her to agree to give it a try she may find it works well. You may need to just ignore the protests initially and be firm. Dad also does 2 days a week at a day centre, they pick him up and bring him home, wonderful. Mum gets about 5 hrs straight free on those days, a godsend. Again, we thought Dad would hate it or refuse to go or something but we gave it a go and so far, in 12 months of going, he has only come home early one day and refused to go at all on one day. These people are used to dealing with the quirks and difficulties this condition may throw up, and they do a great job.
As far as coming to terms with it all, the only thing you can do is take it one day at a time, allow time to start accepting it, and come to the forum if you need support, or a rant, ideas, or even to say things are working well.
Take care,
Stephanie, xxx
Welcome to the forum.
So much of what you say echoes our own situation from a bit further back in our journey. Dad has AD, he is 86, Mum is 82 and his main carer, I am 15 mins away, and my sister is much younger with a toddler, works part time, and lives an hour away, while my children are grown up and working.
Going home can be a very strong urge for many people with dementia. I can only think that it is looking for security, a place and time when everything felt safe and easy to cope. When your mind struggles to explain what you are seeing and feeling, and reason starts to crumble, we can't rationalise and we are left with the raw emotions. Dad was always wanting to go home too, sometimes he stomped through the house yelling out that Mum was locking him up in this jail and not letting him do anything. He is now far more passive and has mobility issues, but he will still get sad and say he is a terrible person because he hasn't spoken to his mum and told her where he is, or he needs to be getting on. Other times he would say he hadn't seen his "people" and where were they? Our family is always around him, but of course his parents passed over 60 years ago and his siblings are gone too. But the urge to connect with that time is still there. Time is such an enemy and so fluid, he has no concept of his own age, he calls Mum, myself and my sister Mama and even though I say I am his daughter, he just smiles, says yes, I love you Mama.
I agree, get onto all the help you can, I must say it wasn't until Mum became very ill last year with pneumonia that I forced the issue with getting her to accept help. We all would feel the same about having strangers coming in and doing the things we have managed on our own. If Mum didn't have Dad to care for she would be perfectly able to cook, wash, look after the home, etc, but not when he is requiring 24 hr care.
Mum was very resistant to someone strange coming in to help but I forced the issue and said give it a try, it can't hurt. She relented and we had an assessment done, we are in Australia so different system to UK. Dad was approved for a care package and an agency contacted Mum to come and visit. The lady was so lovely and all the people who have come in are also just lovely. Mum was so doubting, especially since she is so particular but the lady who does the cleaning is brilliant. Mum would adopt her if she could
Other ones have come to do some of Dad's showers and also for little bits of respite and they have all been so good. It may be the luck of the draw, but it isn't always a disaster.I say this because it is just the idea of someone else coming in that is difficult at first, but if you can just get her to agree to give it a try she may find it works well. You may need to just ignore the protests initially and be firm. Dad also does 2 days a week at a day centre, they pick him up and bring him home, wonderful. Mum gets about 5 hrs straight free on those days, a godsend. Again, we thought Dad would hate it or refuse to go or something but we gave it a go and so far, in 12 months of going, he has only come home early one day and refused to go at all on one day. These people are used to dealing with the quirks and difficulties this condition may throw up, and they do a great job.
As far as coming to terms with it all, the only thing you can do is take it one day at a time, allow time to start accepting it, and come to the forum if you need support, or a rant, ideas, or even to say things are working well.
Take care,
Stephanie, xxx
