Does anyone else feel that we are left to"get on" with this, as best we can? My OH, Vascular Dementia and Alzheimers ( possibly Parkinsons) has not seen a Doctor for over 2 years. All done over the phone, if anything. If it wasn't for the wonderful people at Alzheimers Society and the Speech and Language team, I would think I am imagining our journey! I suppose Doctors don't think they can do anything about this heartbreaking disease, so choose to do nothing. My OH is deteriorating before my eyes and it seems there is absolutely nothing I can do about it at all. Sorry. Bit of a rant there.
On our own here!
- Thread starter Suesue.G.
- Start date
Hi @Suesue.G. I am afraid you are spot on. Once you get a diagnosis, you are on your own until the crisis happens. There are no follow ups, unless you call, no change in meds unless you ask, nothing is offered or given unless you shout and holler. It should be different.
Couldn’t agree more. Attitudes need to change among healthcare professionals but this seems unlikely to happen anytime soon.
I suppose that doctors feel that if they cant do anything for the patient, then there is no point in seeing them.
I think that what we could do with is something like a Health Visitor who knows about dementia, can check on how we are coping, and be able to point us in the right direction when there are problems.
I think that what we could do with is something like a Health Visitor who knows about dementia, can check on how we are coping, and be able to point us in the right direction when there are problems.
I’ve mentioned before that in Scotland we had Link workers for a year after diagnosis and they were extremely useful and helpful in finding things out and directing towards resources. After that it was a CPN once a month if medication was involved and then when established and nothing more to be done it was really down to A&E.
I don’t know if that still continues.
I don’t know if that still continues.
Should Admiral Nurses be taking on that role, canary? I had never heard of them when my mother was still living at home. I think that I was directed to the Alzheimer's Society and that was all.
I don't want to pit one illness against another but it seems to me that there is a whole range of support and facilities for other illnesses (eg specialist breast nurses for Breast Cancer, Maggie's Centres etc, centres for people who have HIV) that do not exist in the same way for dementia sufferers. As was said on another thread recently, I think that doctors feel helpless because there is no possibility of a cure and limited treatment to slow progression. However, there are still things that they can do. People with dementia should be reviewed at least once a year as a matter of routine to see how the disease is progressing and whether the carers need support. There are medications that can improve the mood and 'behaviour' of people with dementia. They can make a significant difference and carers should not have to wait until they are at the point of breakdown before they are told about them. Many people (myself included) are not aware of these medications. Carers should be treated as individuals in their own right and their own health needs properly dealt with. Too often GP surgeries make it difficult for carers to get appointments for themselves because they won't do home visits on the basis that the carer is not technically housebound (but cannot leave his/her PWD).
I don't want to pit one illness against another but it seems to me that there is a whole range of support and facilities for other illnesses (eg specialist breast nurses for Breast Cancer, Maggie's Centres etc, centres for people who have HIV) that do not exist in the same way for dementia sufferers. As was said on another thread recently, I think that doctors feel helpless because there is no possibility of a cure and limited treatment to slow progression. However, there are still things that they can do. People with dementia should be reviewed at least once a year as a matter of routine to see how the disease is progressing and whether the carers need support. There are medications that can improve the mood and 'behaviour' of people with dementia. They can make a significant difference and carers should not have to wait until they are at the point of breakdown before they are told about them. Many people (myself included) are not aware of these medications. Carers should be treated as individuals in their own right and their own health needs properly dealt with. Too often GP surgeries make it difficult for carers to get appointments for themselves because they won't do home visits on the basis that the carer is not technically housebound (but cannot leave his/her PWD).
I agree with other posts. It’s scandalous how carers of PWD are, more or less abandoned.
My husband who had vascular and Alzheimer’s was recently diagnosed with terminal cancer and died 4 weeks ago.
The difference in care is unbelievable.
I was almost, metaphorically beating them off at the door. One day, no fewer than 15 people came to help with his treatment.
What an awful thing to have to be grateful for our loved one getting cancer.?
My husband who had vascular and Alzheimer’s was recently diagnosed with terminal cancer and died 4 weeks ago.
The difference in care is unbelievable.
I was almost, metaphorically beating them off at the door. One day, no fewer than 15 people came to help with his treatment.
What an awful thing to have to be grateful for our loved one getting cancer.?
I think that would be a very good idea. They would be able to advise about most of the things you mentioned in your post and could refer to the GP if it looks like medication could help.
I agree that it would also help if the carer could also be assessed along side the person with dementia and both their needs weighed up together, so that the carer is not brought to burnout because only the PWDs needs are considered.
admiral nurses of for support for PWD carers and families and not the PWD themselves where as alz. soc. are for both
I had to ring OHs doctor on Monday because OH has an infected nail and finger. Spoke with the Doc and he prescribed ABs. 30 seconds later the phone rings and he apologised because he hadn't asked how I was coping. I was pleasantly surprised at that. Mind you he was the Dr who took us through the procedure to the memory clinic and he did say his mum had it so he was keenly interested in his patients that have it. Perhaps we are just lucky to have him.
What we need are Dementia Nurses - much like the MacMillan/admiral nurses but specifically for dementia. You should be assigned one following diagnosis (sorry @canary ...)
The nurse would visit you at home and would be there for both the PWD and main carer. They would look at their individual situation/circumstances and help get you all the care you need and are entitled to. The nurses would be experienced not only in dementia but also the funding system and be able to give general, sensible advice on getting PoA, etc. They would liaise with GPs, hospitals, social services, OT, physio, continence services and others, as necessary. You would be able to phone/email your named nurse whenever you needed more help or advice.
One person to co-ordinate all the others - imagine that!
And maybe one ring to rule them all...
The nurse would visit you at home and would be there for both the PWD and main carer. They would look at their individual situation/circumstances and help get you all the care you need and are entitled to. The nurses would be experienced not only in dementia but also the funding system and be able to give general, sensible advice on getting PoA, etc. They would liaise with GPs, hospitals, social services, OT, physio, continence services and others, as necessary. You would be able to phone/email your named nurse whenever you needed more help or advice.
One person to co-ordinate all the others - imagine that!
And maybe one ring to rule them all...
Agree with everything. It's not rocket science , is it? Or is it?
The other issue I have is the idea that a carer support group is the answer to all the carer's woes. Maybe it's just me, but I actually don't want to give up some "me"time, to go and talk to other people in the same boat. If I have a break, I do not want to spend that time on something dementia related. Selfish, I know. When offered this solution, I asked if there was a creche. A puzzled, "No. Why?" " Well, what do I do with my PWD, who can't be left?" Apparently I get a sitter. Apart from the cost, have you actually tried to get a carer for a few random hours a month? And there are things that I've shared here that I would never admit face-to-face with somone I might meet at the deli counter in Tesco.
The other issue I have is the idea that a carer support group is the answer to all the carer's woes. Maybe it's just me, but I actually don't want to give up some "me"time, to go and talk to other people in the same boat. If I have a break, I do not want to spend that time on something dementia related. Selfish, I know. When offered this solution, I asked if there was a creche. A puzzled, "No. Why?" " Well, what do I do with my PWD, who can't be left?" Apparently I get a sitter. Apart from the cost, have you actually tried to get a carer for a few random hours a month? And there are things that I've shared here that I would never admit face-to-face with somone I might meet at the deli counter in Tesco.
I get what your saying. Nice to have time doing things you need to do. Carer group may work for some people but not always for others.
My sisters and I were lucky to be treated to a spa day and some treatments. Enjoyed time together for a few hours without worrying about dad. As hubby was looking after dad.
My sisters and I were lucky to be treated to a spa day and some treatments. Enjoyed time together for a few hours without worrying about dad. As hubby was looking after dad.
admiral nurses are specialist dementia nurses. the problem is they dont work closely enough with carers for help. they are another that you have to ask. i dont think that there are enough of them. they could be based at the memory clinic.
i must admit it was the dementia navigator of alz. soc. that gave me all the information, referred us to the right services, liaise with gps, social services, benefits, carers so im very lucky that she is so dedicated. she referred me to agencies and other agencies for my husband. maybe she is the exception but she is there for us as and when.
Reading all your posts has, kind of, reassured me in that it is not just our Doctors who are not interested. I did try to ask my husband's doctor to see him, to reassure us that we were doing all we needed to be doing. He referred me to the Admiral Nurses' Crisis Team. They rang me and wanted to know what my Crisis was? I explained why I had phoned our doctor, and, that I hadn't said we were in Crisis, that I had just wanted some guidance and reassurance. The Nurss told me that they could not help me until we were actually in Crisis! How do we know when that is?
