i care for person with dementia.

[Sleep-deprived]

Oh dear, I’m afraid I can’t really offer help or even real advice as most days I feel as if I’m wading through treacle trying to care for my husband. I too have noticed that many well-meaning (giving them the benefit of doubt) people are quick to offer advice, much of which would be totally impracticable to implement. My goodness tu PM response tends to be a short laugh followed by something along the lines of ‘any time you want to take over for a few hours please let me know - night duty would be greatly appreciated’! Mmm, no takers to date …
Also aggravating is the bland ‘you must take care of yourself’ comment. I totally agree … but how? I can’t even go for a 20minute walk as I daren’t leave him. Talk is cheap, nonsense is in plentiful supply - I cope by thinking those who make such comments need more help than us carers ?.
Sorry not to be more more useful but I think many of us have to face the unwanted - and mostly useless - comments thrown at us. It’s just reassuring to know that although we may not have signed up for this particular club there’s a large and, on the whole, supportive membership. Good luck and confound the know-alls (ha!) with humour.

 

[Shedrech]

hello @Sleep-deprived
just to offer a warm welcome to posting on DTP
there certainly is a supportive and understanding set of folk here ... so keep posting; sharing helps

 

[MsJC]

Hello all, I’ve concluded that unless you’ve had experience of caring for someone with dementia it’s almost impossible to understand what the cater or patient is experiencing. My mum had vascular dementia and I heard many times ‘we all get forgetful with age’ not true! This disease affects every aspect of the personality, memory is just one part of the whole picture.
Stay strong and carry on doing the right thing for your loved one.

 

[jennifer1967]

Hello all, I’ve concluded that unless you’ve had experience of caring for someone with dementia it’s almost impossible to understand what the cater or patient is experiencing. My mum had vascular dementia and I heard many times ‘we all get forgetful with age’ not true! This disease affects every aspect of the personality, memory is just one part of the whole picture.
Stay strong and carry on doing the right thing for your loved one.

with vascular dementia, its more about logic, reasoning and sequence than memory loss. trying to explain that different forms of dementia have different signs other than just memory is like talking a foreign language to "trained" agencies. they have this image of an older person, a bit eccentric with memory loss and assume that all forms of dementia are the same.

 

[stopwatch48]

my wife has been diagnosed with mixed dementia and I am her only carer, I have mobility issues so we cope in a fashion. Our family deal with their mothers condition by ignoring it, our daughters stay away as much as possible, don’t phone or visit because they find it upsetting. We have become to a certain extent invisable people, I do get advise sometime about joining social groups, going on holidays and best yet moving into a retirement home this is from people who visit for ten minutes in six months but ignore both of our limitations or needs, but there is no offer of help just useless advice, sometimes the help might just be a conversation, I know it can be upsetting repeating the same conversation but it does stimulate her.
Sorry for the rant but it is frustrating

 

[Starting on a journey]

But on the other hand there are people who understand.
- the elderly neighbour who held my hand and said “yes” she knew..looked after mum and aunt when she was younger. At the time I had my children growing up and I just smiled and waved to her as I got on with life. Never occurred to me that she might need help …

- there was the lady at the sewing bee who looked after her mum and gave me hope

- the lady I spoke to who had just lost her mum to this disease.

I think until you have been “up close and personal to this disease then you don’t understand “

Mind you there was the doctor I spoke to last week who told me to tell mum about the three different treatment options for a mole on her neck and sent me a leaflet for practitioners rather than patients. When I said I would have to dumb it down she informed me that in her experience patients were often much better than their carers said they were!!! (She has never met my mum)

 

[Lawson58]

But on the other hand there are people who understand.
- the elderly neighbour who held my hand and said “yes” she knew..looked after mum and aunt when she was younger. At the time I had my children growing up and I just smiled and waved to her as I got on with life. Never occurred to me that she might need help …

- there was the lady at the sewing bee who looked after her mum and gave me hope

- the lady I spoke to who had just lost her mum to this disease.

I think until you have been “up close and personal to this disease then you don’t understand “

Mind you there was the doctor I spoke to last week who told me to tell mum about the three different treatment options for a mole on her neck and sent me a leaflet for practitioners rather than patients. When I said I would have to dumb it down she informed me that in her experience patients were often much better than their carers said they were!!! (She has never met my mum)

It really helps when you can find people who understand. My volunteer group has a number of people who have some one with dementia and we can offload with each other. One has just lost his mum at the of 98 after years of care, another has a mum who still insists on living alone at 95 with Alzheimer’s and profound deafness and yet another has his wife in a nursing home.

We all know what it is like and we have a bond as a result of our experiences.

 

[Izzy]

my wife has been diagnosed with mixed dementia and I am her only carer, I have mobility issues so we cope in a fashion. Our family deal with their mothers condition by ignoring it, our daughters stay away as much as possible, don’t phone or visit because they find it upsetting. We have become to a certain extent invisable people, I do get advise sometime about joining social groups, going on holidays and best yet moving into a retirement home this is from people who visit for ten minutes in six months but ignore both of our limitations or needs, but there is no offer of help just useless advice, sometimes the help might just be a conversation, I know it can be upsetting repeating the same conversation but it does stimulate her.
Sorry for the rant but it is frustrating

Welcome to the forum @stopwatch48.

 

[Violet Jane]

I really think that people don't understand that dementia is not just about short term memory loss or. If it was, that wouldn't be too bad although it would still be irritating, tedious etc. As @jennifer1967 says, it's the loss of skills and the behavioural changes that are so challenging but these aren't always apparent on short visits. Someone arriving at the house may see a well groomed and well-nourished PWD and a clean and tidy house. They don't see that the PWD has had help with washing and dressing and that the carer does all the housework, shopping, cooking, washing, admin and arranges all medical and other appointments and all outings and other social events. They don't see that the PWD can't follow a story in a television programme or a book any more. They don't see that the PWD is a danger to his/herself or can't be left alone or gets highly anxious when his/her carer is out of his/her sight. If the PWD has good verbal skills (many do in the earlier stages), is cheerful and sociable and has all the social niceties then the full extent of his/her cognitive difficulties may not be immediately apparent.

 

[Muttimuggle]

In my local authority the dementia service is called "The Memory Clinic". I am not sure if this is nationwide. I do recognise that it is useful and less distressing for the PWD to think, therefore, that their "memory just isn't what it used to be"....and not to have the additional worry or full realisation of how their dementia may well be impacting much more than just their memory. It could or can be misleading to an outsider who doesn't know what is really going on though.

 

[jennifer1967]

In my local authority the dementia service is called "The Memory Clinic". I am not sure if this is nationwide. I do recognise that it is useful and less distressing for the PWD to think, therefore, that their "memory just isn't what it used to be"....and not to have the additional worry or full realisation of how their dementia may well be impacting much more than just their memory. It could or can be misleading to an outsider who doesn't know what is really going on though.

the memory clinic in our area is purely test and diagnose. nothing more. we dont have reviews etc and have to rely on the gp for referrals if needed. we do have the alz. soc. dementia navigator who was very helpful and she knows what services do what. otherwise we would flounder if we didnt have the forum. i do believe that people, medics and stat bods really dont want to learn about dementia and its types. i dont think there is a willingness to learn or change their approach to be truthful when they are informed.

 

[Carole H]

Does anyone have ideas on how to deal with armchair advisors who think they know everything, and of course cause lots of problems, the same advisers think that because i am retired and a full time carer for my wife that i get hundreds of pounds in benefits every month, not the case, i find it hurtful i am a proud person and thats why it hurts. If only people kept thier noses out how much easier life would be ,who agrees or disagrees, answers and ideas all welcome, thanks in advance,lorryman.

Think you need to try to distance yourself from these type of people. You know what your doing is the right thing for your circumstances

 

[Agzy]

As I told the woman who lives opposite me, who finds it inappropriate that a young (ish) man would be caring for his mother, when you fund her care then you can have an opinion.

One time when I had to call an ambulance for mum she couldn’t wait to interfere and told one of the paramedics I was a drug addict and an alcoholic. When he asked about it I laughed. You think I could afford the luxury of being a drug addict on carers allowance? ??? All because one night I was enjoying the sunset out front with a glass of whiskey and having a cigarette as a bit of a treat after a hard day with mum. I’d given up smoking years ago when I started looking after mum BECAUSE I CANT AFFORD IT ???

I guess a thick skin and sharp wit are the best defences against people who have no concept of the grind that being a carer is.

It is amazing how often a self treat or even a short respite break are seen by onlookers as being totally unacceptable and selfish but as you say, ‘thick skin’ helps.

 

[Sushar]

The flippant remarks are very hurtful I have struggled with guilt and immense sadness at having to take my mother to a care home I m still stressing now 5 weeks on When I told a close relative the reply I got was “ well I hope that’s in your mothers best interests “ I didn’t know wether to cry or get angry at the sheer audacity of them thinking that they deserved an opinion Until you ve been in this position , you have no idea of the heartache involved Not only dealing with the strain of having to make this terrible decision but doing it for a person that you hardly recognise Love to all who are hurting x ?

 

[TinaT]

It seems long time since my husband died but he suffered from Lewy Body Disease, I think caused by Parkinsons Disease. He was in his late 50s when it became quite apparent that the disease was rapidly turning him into someone who needed help constantly night and day and eventually he had to go into a care home for the last 4 years of his life and he died aged 69. I visited the care home daily and devoted myself tirelessly to his welfare during his stay in the care home.

What always has and always will, hurt me are the people who when I tell of his dementia come out with " Oh I knew someone -blaa blaa blaa - and then go on to say what they think is some twisted, simple idea of what the person used to do or the people who see a carer in a public place etc and start to refer to all dementia sufferers as "they" do this or "they" do that --Blaa, blaa blaa blaa--. Armchair experts who know NOTHING but they have seen a friends elderly mother, father etc behaving in a particular way and think they then know all about the illness

Every dementia sufferer is an INDIVIDUAL PERSON and dementia affects each person in different ways and at differing speeds of progression, Dementia is such a broad spectrum term for so many individual sufferers caused by many different factors . I just wish we carers and past carers could get this across to people who think they know exactly what dementia is but really have not the faintest idea what suffering, what degree of suffering , and, what progression this general term refers to
xxTinaT

 

[Canadian Joanne]

@TinaT it has been a long time since I've last seen you here.

I agree with you about the ignorance some people have regarding dementia in all its forms. To this day, I still tell people that dementia is not a mental issue but a physical disease. Mind you, I do think that we will find that most mental health issues will be related to physical reasons. We already know about chemical imbalances in depression and bipolar disease.

 

[Muttimuggle]

This thread was meaningful to me today. A relative told me today on the phone, "You worry too much! Your mother's fine". I have spent the last 3-4 weeks looking for a care home for my mother, where thankfully she will go willingly, next week. I have also been visiting my mother in her reablement centre where she was placed, from hospital, after breaking the neck of her femur. I have been liaising with staff about her needs and also beginning the sorting of my mother's house which will eventually be sold. I met the same relative at a funeral earlier in the year and felt disbelieved about how my mother was, that she was suffering with dementia, because the relative, who couldn't understand why I hadn't brought her to the funeral thought she "Sounded fine on the phone...." That was my mother practising her hostess mode of course. This relative never went to see my mother during her 6 week stay in the reablement centre although she did offer to look at care homes with me. It wasn't practical because the relative lives at a distance and I also felt she has not been accepting of the full picture as I witness it.I think I need to develop a thicker skin.

 

[SeaSwallow]

This thread was meaningful to me today. A relative told me today on the phone, "You worry too much! Your mother's fine". I have spent the last 3-4 weeks looking for a care home for my mother, where thankfully she will go willingly, next week. I have also been visiting my mother in her reablement centre where she was placed, from hospital, after breaking the neck of her femur. I have been liaising with staff about her needs and also beginning the sorting of my mother's house which will eventually be sold. I met the same relative at a funeral earlier in the year and felt disbelieved about how my mother was, that she was suffering with dementia, because the relative, who couldn't understand why I hadn't brought her to the funeral thought she "Sounded fine on the phone...." That was my mother practising her hostess mode of course. This relative never went to see my mother during her 6 week stay in the reablement centre although she did offer to look at care homes with me. It wasn't practical because the relative lives at a distance and I also felt she has not been accepting of the full picture as I witness it.I think I need to develop a thicker skin.

@Muttimuggle You really don’t need a thicker skin, you just need to ignore people who do not have a clue. You are doing a good job of caring for your mum, and that is all that matters. Hope all goes well for the move.

 

[slim-jim]

Does anyone have ideas on how to deal with armchair advisors who think they know everything, and of course cause lots of problems, the same advisers think that because i am retired and a full time carer for my wife that i get hundreds of pounds in benefits every month, not the case, i find it hurtful i am a proud person and thats why it hurts. If only people kept thier noses out how much easier life would be ,who agrees or disagrees, answers and ideas all welcome, thanks in advance,lorryman.

Why not ask them to look at this site and read a lot of comments. If they refuse or scoff at the contents then in my opinion they are not worth taking seriously.

 

[Muttimuggle]

@Muttimuggle You really don’t need a thicker skin, you just need to ignore people who do not have a clue. You are doing a good job of caring for your mum, and that is all that matters. Hope all goes well for the move.

Thank you, SeaSwallow......and I've even been getting myself muddled up now....she will be moving this week, not next! And today is her birthday -91! xxxx