Hello. I am a spouse carer

[D C McNeillis]

I am husband to a PWD who was diagnosed in Nov 2021 with Young Onset Dementai after around 5 years of being told that diagnosis was "performed by elimination". After eliminating all normal female possibilities for a person aged 45 and above, they started looking at Dementia, which took another 2 years.

Following diagnosis, Cognitive Stimulation Therapy (CST) was offered and my wife attended that. Thereafter, 6 months of MCST (Maintenance CST) was offered run by Age-UK in Worcester. Both were very good. At the end of MCST, we (the carers of PWDs) asked Age-UK Worcester if they would consider extending the group, at any cost (we saw the value) and we paid £5 for a 2 hour session run by them. During these sessions, we, the 6 carers of the inital group of PWDs went for coffee and a chat. We thank Age-UK Worcester for running these session, which they have limited to 6 months after MCST.

Subsequently, we have formed opinions about the important of education and "relevant" support to Carers, which does not generally happen at the moment. The amount and relevance of education and support will make the most impact on quality of life at late stage Dementia, we think. There are very good examples of what we do not have in the UK, on YouTube, from other geographies such as Canada, Australia and USA (although it must be said that one still has to intelligently interpret anything on such a public domain).

Now at later stages of dementias, some of the group meet for coffee on their own, we have a WhatsApp group and each do try different ways to muddle along but are feeling that late stage Dementia in the UK is either a case of PWDs going to a Care Home or DIY care. Things could be so much better and I am trying several avenues to participate in positive influencing of Education for Carers in late stage Dementia.

 

[Jaded'n'faded]

There are many things that could help both PWDs and their carers. Unfortunately, they all cost money so it ain't gonna happen.

Dementia continues to be ignored/swept under the carpet in this country

 

[jennifer1967]

not sure its just late stage dementia, very telling is that my husband had an annual review for his diabetes and copd but dementia was not even mention other than the difficulties we have concerning the other conditions.
its not romantic or sexy so doesnt attract money.

 

[My Mum's Daughter]

I'd prefer you to influence the medical profession in late stage dementia as their current attitude is quantity instead of quality of life. I question why they're "building up" a woman who's been laid flat on her back for months and is incapable of doing anything for herself.

 

[Lawson58]

I am husband to a PWD who was diagnosed in Nov 2021 with Young Onset Dementai after around 5 years of being told that diagnosis was "performed by elimination". After eliminating all normal female possibilities for a person aged 45 and above, they started looking at Dementia, which took another 2 years.

Following diagnosis, Cognitive Stimulation Therapy (CST) was offered and my wife attended that. Thereafter, 6 months of MCST (Maintenance CST) was offered run by Age-UK in Worcester. Both were very good. At the end of MCST, we (the carers of PWDs) asked Age-UK Worcester if they would consider extending the group, at any cost (we saw the value) and we paid £5 for a 2 hour session run by them. During these sessions, we, the 6 carers of the inital group of PWDs went for coffee and a chat. We thank Age-UK Worcester for running these session, which they have limited to 6 months after MCST.

Subsequently, we have formed opinions about the important of education and "relevant" support to Carers, which does not generally happen at the moment. The amount and relevance of education and support will make the most impact on quality of life at late stage Dementia, we think. There are very good examples of what we do not have in the UK, on YouTube, from other geographies such as Canada, Australia and USA (although it must be said that one still has to intelligently interpret anything on such a public domain).

Now at later stages of dementias, some of the group meet for coffee on their own, we have a WhatsApp group and each do try different ways to muddle along but are feeling that late stage Dementia in the UK is either a case of PWDs going to a Care Home or DIY care. Things could be so much better and I am trying several avenues to participate in positive influencing of Education for Carers in late stage Dementia.

I think you have managed to achieve what so many of us would like to do and that is to find your own mutual support group. And it is encouraging that you were offered something in the early stages when perhaps you needed it most. You were given a starting point and somewhere to go forward.

Many carers simply cannot get out on their own to even to do personal shopping and lots are deserted by family and friends and often they are very short on options regarding care and finances. Sometimes, they are trying to hold down jobs and care for young families while caring for an elderly relative.

I live in a regional city in Australia and am in my eleventh year of caring. I am in the fortunate position that as yet, I have not yet had the need to go through government assessment programs and the waiting list is pretty awful anyway. There is a statewide Carers body but they rarely offer any events in my town. We have a Dementia Australia office in town and I used their helpline once before diagnosis , and attended some information sessions but have had no contact with them since. So no bed of roses here either. I needed to have some counselling but had to wait months for an appointment.

I do think you do a great disservice to care homes, acknowledging that are some terrible ones, some brilliant ones and lots in between. I personally don’t think that some families have any other choice but to resort to care homes. And I don’t think any amount of education can solve the ongoing problems of abuse and often physical violence. I have no idea of how awful it must be to have to meet the ongoing needs of an incontinent person who may resist the very act of cleaning and do it for years.

I would really love to hear what ideas you have about positive education for carers. We really need all the help we can get which sort of explains why we are on this forum. I consider myself to be one of the lucky ones as my husband is able to go out without me, he takes care of his own personal hygiene and I have my own social network. But it hasn’t always been like that. At one stage, I was contemplating suicide and really desperate. Things are different now but it’s been my own hard work that has got me here.

My husband is 84 years old and apart from dementia has chronic heart failure. I am 80 years old.

 

[D C McNeillis]

Hello Lawson58 and thank you for replying. I start by having a very positive view of your beautiful country, having visited in December 2004 when one of my four children competed in the Commonwealth Youth Games in Bendigo. Two of the other three have visited and my daughter's degree at Worcester University UK included a semester at a University in Adelaide. Up until September last year, I has spent 25 years as a volunteer, coaching Athletics. In the last three years I coached a Para Athlete and we had great connections with one of your Para Athletics coaches.

I do take your point about care homes; my brother owns three and runs them wonderfully and often puts personal money in to maintain standards - he might be at the very top of standards. Conversely, my sister has recently been moved from one to another due to poor quality that nearly cost an her a preamturely early death and is now in an excellent one, putting on weight and completely unaware of the excellence around her.....but my brother led/managed the investigations and move, so we are somewhat blessed to have "family with knowledge".

In terms of what ideas I have for future eduction of carers....

Having developed ideas via our local "Coffee Club" of carers and personal research, in the past two months I have sought out bodies/individuals with whom I could connect that might influence future policies. I ahve jotted down and shared some of my ideas with a "Regional Dementia Board", who are an on-line group who discuss all ideas around Dementia and Support in the UK. They are a little stuck in the "easy stages" of Dementia and their efforts and budgets are almost all consumed in trying to get GP's to diagnose and report Dementia more efficiently.

My personal research, as my wife is stage 6c/d/e (on the FAST scale) or late-stage (on the 3-stage scale) has focused on what my help me, inform me what is coming next and thereby help me prepare. For example, I have made modifications to the home ahead of needing them, as I know that my wife's behaviour might not allow me to drill and cut and saw at that stage! (It might also be worth saying that my eldest son is a Consultant Psychiatrist and oftentimes helps me interpret conversations with Medical staff, although it takes a toll on his love for him Mum, naturally.)

Attached is a (rather long, sorry) list of information I submitted to the Regional Board recently, mainly comprising YouTube video links from geographies where distance is a factor in the provision of face-to-face support and assistance....