I totally agree. I feel like as someone now less involved in dad's care, that I should do something. But i work full time and of course have a life and my own family to think about... what could I do which would be time-effective, to have a big impact, is what I ask myself?
Why are carers left with ALL the responsibility and left having to look/ask for everything?
- Thread starter LucyEllen
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Another thing to consider is the feelings of those who have been diagnosed with dementia, or think that they may be showing early signs of dementia. Any campaign or tv programme which showed the raw realities of how things can be could be very traumatic for them - possibly putting people off seeking a diagnosis (when they may not even have dementia) or making them hide their symptoms from others. I wince at some of the things we write here which must be a very hard read for anyone with dementia, although I feel it is important that we are able to do so. There's a tricky balance to be had between showing things how they can be and encouraging people or families to seek help when they are probably already scared.
Thank you. I am aware that I am afraid to besmirch my husbands memory if I told the most traumatic things. So I am left carrying the trauma alone. We would never get permission to film the reality in a nursing home, or if we did it would be whitewashed. They are never going to show residents behaving like wild animals or throwing poo around. We are stuck because it is so horrible. So we are silenced by our own shame. This has to change.
Kindred. X
Thank you, that’s what I mentioned in an earlier post but you have expressed the dilemma much more clearly!
Kindred
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A good point @lemonbalm, although IMO, its swinging too far to the "lets not tell people in case it upsets them" response.
There is also a problem in that there is no cure and in many cases no treatment. Unlike cancer, when you can say - get it checked early and treated early so that your survival rate is improved - with dementia no one survives and there is huge temptation to sweep it all under the carpet and pretend that its not happening. After all (the reasoning goes) why bother with all of that and upsetting the PWD if it wont make any difference?
Thank you. So true. If people did understand and know more, what would we like them to do differently?
Kindredx
This is such an interesting thread to read how others are feeling and I don't think I would have got through without the help that I received from others on here, it truly is the best help that I ever received in my life. My dad was the perfect "dotty" but happy Alzheimer's /dementia person, no trouble, kind hearted, very well spoken, and remarkably quick witted, he had an answer for everything but his dementia consumed me. I was always there for him even long before the diagnosis so when he eventually started to get worse I just carried on (nobody else was interested)
Perhaps if I had been a little less willing then I may have got some help from family (I think I am kidding myself here) but who knows. I just know that I can't shake it off. Perhaps it's the lockdown but for me nothing has changed except I haven't got dad to worry about anymore.
I saw a neighbour a while ago who said 'she hadn't seen me for ages' which is true because I just sort of vanished off the face of the Earth for some years almost as if I was abducted by aliens but now I am expected to just go back to normal. It is a kind of trauma, I was frightened most of the time, on high alert just waiting for something awful to happen all the time. Up and down except each down was a further step to more confusion for dad and more worry for me.
People haven't got a clue until they experience it.
Perhaps if I had been a little less willing then I may have got some help from family (I think I am kidding myself here) but who knows. I just know that I can't shake it off. Perhaps it's the lockdown but for me nothing has changed except I haven't got dad to worry about anymore.
I saw a neighbour a while ago who said 'she hadn't seen me for ages' which is true because I just sort of vanished off the face of the Earth for some years almost as if I was abducted by aliens but now I am expected to just go back to normal. It is a kind of trauma, I was frightened most of the time, on high alert just waiting for something awful to happen all the time. Up and down except each down was a further step to more confusion for dad and more worry for me.
People haven't got a clue until they experience it.
maybe to stop the cutesy image, not have to fight for every little thing. that SW know how to react when people are struggling, so whole families can be educated, remove the stigma, embarrassment of having a relative that has it. to treat PWD with dignity and not pity, know what works and what doesnt, more information more readily at hand without having to search for it, what each group does an d which medical dept explained. to educate how important it is for the carer to be by the side of PWD when in hospital or anywhere else they need help to be understood.
I think it would be good to have somebody who can advocate on behalf of the carer and to mediate between the carer and SS/NHS. All too often the carers needs are completely dismissed and we are too tired/ dont have enough time to fight. It would be good to have someone on our side looking at our needs too - not just the PWDs.
sometimes they leave it at a fullstop so unless you know more, theres nothing you can add but if you know what questions you need to ask to get the right information
All I can say is that you don’t come across as ‘dipsy’ or ‘unstable’, just honest. It’s refreshing to hear someone saying it how it really is. I have never before felt so ‘upper downy’. One day I am certain that I can’t carry on like this for a moment more, and the next I think that I can’t simply abandon my OH to the confusing and noisy world of a care home. My body aches with exhaustion, I’m worn out, but can’t sleep, and my mind won’t settle on anything for any length of time. We are imprisoned together in this strange ‘Alice in Wonderland’ world, and few people have any notion of what it’s really like. We have a very pleasant worker from Alzheimer’s support who phones to check on us every so often, and naturally asks how we are, and how we are doing. I never know how to answer this as it’s just impossible to put into words.
Thank you to everyone who has posted on this.
My PWD went into a care home nearly 6 months ago and I am still nowhere near OK after some of what happened, but am due to start some counselling.
The only thing I can really think to do is to build up my ability to speak honestly about what has happened. This is helping to restore some friendships which were disrupted during the caring process, and has also meant that some other stories have emerged about isolated incidents which happened a long time before diagnosis, which I didn't previously know about. This helps with my guilt at being unable to cope: it had gone on for longer than I acknowledged.
Luckily, I can do a "compare and contrast" as it used to be called at school, because as well as my recent horrific experiences, I had very different but equally sad experiences with a family member during my teens. The family member was far gentler. So I'm able to tell people that the disease can take many different paths - but I also tell them that if you ever hear a carer say that they can't cope, they are not making it up, they need help immediately.
I'm still too fragile to say much, and I'm naturally shy. I also know that I'm going to get even more criticism for what I say, and for moving on with my life in ways which others don't approve of, than I have already had for my desperate failings as a carer.
But one day I will be ready to stand up and be counted.
My PWD went into a care home nearly 6 months ago and I am still nowhere near OK after some of what happened, but am due to start some counselling.
The only thing I can really think to do is to build up my ability to speak honestly about what has happened. This is helping to restore some friendships which were disrupted during the caring process, and has also meant that some other stories have emerged about isolated incidents which happened a long time before diagnosis, which I didn't previously know about. This helps with my guilt at being unable to cope: it had gone on for longer than I acknowledged.
Luckily, I can do a "compare and contrast" as it used to be called at school, because as well as my recent horrific experiences, I had very different but equally sad experiences with a family member during my teens. The family member was far gentler. So I'm able to tell people that the disease can take many different paths - but I also tell them that if you ever hear a carer say that they can't cope, they are not making it up, they need help immediately.
I'm still too fragile to say much, and I'm naturally shy. I also know that I'm going to get even more criticism for what I say, and for moving on with my life in ways which others don't approve of, than I have already had for my desperate failings as a carer.
But one day I will be ready to stand up and be counted.
I actually knew someone who worked in this area long ago. I think they struggled for funding. It would be a great resource.
there used to be Mind Advocacy Matters where i live because i did use it but the funding got stopped so the service was closed.
Dementia mainly affects people over the age of 65 but a younger person tends to take longer to diagnose symptoms of dementia they are often mild and may get worse gradually ok a diagnosis can be scary at first however for a younger person employment maybe important they may need a job to meeting their financial needs it also provides purpose, daily routine, personal satisfaction and benefit from the professional and personal relationships they form at work
from my own experience regarding support when diagnosed at age of 56 I wanted to continue working I did not want to be on any disability benefits in order to continue in employment I had excellent help and support from : my G.P’s , Consultants at memory clinic , Occupational Therapists, Unison, Alzheimer’s Society not forgetting family members this support continued until my retirement at age of 65 almost 9 years obviously after my retirement I still have medication and at first 6 monthly visits from memory clinic in order to get medication from GP that has now gone 12 monthly visits honestly I just don’t know what more medical treatment I could get for my dementia however I do know I definitely Do Not need a Carer
from my own experience regarding support when diagnosed at age of 56 I wanted to continue working I did not want to be on any disability benefits in order to continue in employment I had excellent help and support from : my G.P’s , Consultants at memory clinic , Occupational Therapists, Unison, Alzheimer’s Society not forgetting family members this support continued until my retirement at age of 65 almost 9 years obviously after my retirement I still have medication and at first 6 monthly visits from memory clinic in order to get medication from GP that has now gone 12 monthly visits honestly I just don’t know what more medical treatment I could get for my dementia however I do know I definitely Do Not need a Carer
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I think that is what Admiral Nurses hope to be able to do ... sadly they are few in number and no doubt under-funded ... and I don't know whether Memory Clinics/GPs are as aware of them as they could be, to recommend them to those newly diagnosed and more especially their family/friend
Yes, I thought of the Admiral Nurses @Shedrech , but they are so thin on the ground that ATM I feel that in most places they can do little more than offer advice.
With the right funding, they could be a tremendous help to carers, but what is needed is someone who would be at the centre, rather than just another person who could help, if only you had known.
With the right funding, they could be a tremendous help to carers, but what is needed is someone who would be at the centre, rather than just another person who could help, if only you had known.
Your last sentence is so very true. Several times people from the memory clinic, including doctor have said, "hi how are you both," or "how are you coping"? and I've been stumped, I feel like saying if you've got a couple of hours I'll tell you. I don't know why they don't have appointments just for the carer. It's almost impossible to tell the doctor what you want to say, when your loved one is sat next to you. On a couple of occasions out of sheer frustration I've written a letter to the memory clinic doctor, stating what has been happening at home.
Such very interesting and valuable points made in this thread.
I attended a 2 hour discharge meeting today - exhausting. For the first time I met my husband's social worker. He has seen him once. I had to ask for a copy of the nurse's assessment which was emailed, after reminding, yesterday at 5pm, 40 page document. I was not able to process it sufficiently before the meeting and was shocked about some of the comments. I arrived and there were no hard copies (no my printer is not working!). Fortunately our Alzheimer's support worker was able to to attend virtually, she was and continues to be very valuable. Just before the meeting 2 students approach me asking if it's OK to sit in! Sorry no. My husband has not communicated with his son for 3 years, and does not want to see his brother. In the meeting the social worker tells me that daughter in law contacted social services mid February asking for contact - I had no idea and feel a major headache coming on. I tried to remain composed but did start to cry. However, after all that, I have to say that it became clear the struggles the staff face having to work within the processes and systems in place. I think this is the key. There are so many different agencies involved and they do not speak to each other and carers as well as our loved ones are stuck in the middle. As we are reminded many a time - we all want what is best for . . . . Yes, we know this, but they need to streamline and try to minimise bureaucratic chaos leave carers as if they are in limbo. They and the social worker, despite not having met him before, were kind, supportive and willing to listen. At the end all were agreed that my husband will be going into residential care. So now the next battle is finances.
I attended a 2 hour discharge meeting today - exhausting. For the first time I met my husband's social worker. He has seen him once. I had to ask for a copy of the nurse's assessment which was emailed, after reminding, yesterday at 5pm, 40 page document. I was not able to process it sufficiently before the meeting and was shocked about some of the comments. I arrived and there were no hard copies (no my printer is not working!). Fortunately our Alzheimer's support worker was able to to attend virtually, she was and continues to be very valuable. Just before the meeting 2 students approach me asking if it's OK to sit in! Sorry no. My husband has not communicated with his son for 3 years, and does not want to see his brother. In the meeting the social worker tells me that daughter in law contacted social services mid February asking for contact - I had no idea and feel a major headache coming on. I tried to remain composed but did start to cry. However, after all that, I have to say that it became clear the struggles the staff face having to work within the processes and systems in place. I think this is the key. There are so many different agencies involved and they do not speak to each other and carers as well as our loved ones are stuck in the middle. As we are reminded many a time - we all want what is best for . . . . Yes, we know this, but they need to streamline and try to minimise bureaucratic chaos leave carers as if they are in limbo. They and the social worker, despite not having met him before, were kind, supportive and willing to listen. At the end all were agreed that my husband will be going into residential care. So now the next battle is finances.
