Hello and Scans

[Tea and. toast]

Hello everyone

I came across the forum a couple of weeks ago and it has given me some comfort that i am not alone. I care for a close relative who has been diagnosed with either AD or AD with Lewy Bodies. It is strange to talk about my relative in the public domain. As with other members I've experienced a range of emotions and tiredness as things seemed to have progressed since November last year with other health issues going on too. The consultant wants my relative to have a Datscan.

When staff rang me to arrange the appointment i asked what the scan process would entail. It seems that it maybe a big ask of my relative who would have to be strapped down and keep still for 40 minutes with the scanner not far from their face. As my relative was recovering from a fall I have said that i will get in touch with the staff.. I know I will have to speak to the consultant about would treatment be different if my relative had a scan or not. I hope I haven't alarmed anyone who may have to have such a scan. I know I have to make the decision but thought I would just share this. Thanks

 

[karaokePete]

Hello @Tea and. toast, you are welcome here and I hope you find the forum to be a friendly and supportive place.

You are correct to talk this over with the medics. In my wife's case I thought that she wouldn't cope with the scans. However, my fears were unfounded and the scans finally provided a diagnosis. I hope things work out for you.

Beyond that, I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[Tea and. toast]

Hello Karaoke Pete

Thanks for the welcome and the useful links. I have yet to speak to the medics as lots going on and I work part time, but my relative has a home visit from the Memory Clinic this Thursday so if I don't get to speak to Dr will wait til then. My relative received the The Dementia Guide (well it was given to me to look after) and I've looked up a few things on the site. Though some of the factsheets could be useful. New things happening which I am having to deal with. I have got PoA a few months ago so glad that was put in place before now. This time last year my relative was doing okay but things began to change at the end of November. Not to worry.

Rather tired at the moment. Missing going for my walks. I've been reading some of the other posts and my relative too has a tendancy to hide things another teaplate has gone walkabout. I found a small dish with grapes and a pot of unopened yogurt under the chair when I was hoovering the other day. Plus getting them showered in the morning and ready for bed can be challenging. Carers come in in the morning and at lunch time to help. I would like to send a big hug to all the carers and those living with dementia. There is just so much to take in.

 

[Shedrech]

hi @Tea and. toast
welcome from me too
one of the important things about DTP is that we are all anonymous, and therefore 'private' so we can discuss anything in the way that's best for each of us - it's not nastily going behind someone's back to be malicious; we need support, to be able to say it as it is and share experience so we know we're not completely alone or isolated
there is a lot to take in, but there's also time .. you sound to have already put a lot in place, and I'm glad that you have home care visits .. maybe consider some day care too, so that you have a chance for a walk and time for yourself

 

[Tea and. toast]

Hello Shedrech

Thanks for the welcome. Yes it is good to share things on here. Though I find it hard to talk about some things. It is good to know that i am not alone when in feeling exasperated at times. Sometimes I can feel very alone especially after a bit of a frustrating time with my relative in the early hours. Hence the tea and toast. So I have had a look around the forum I have friends who have /had experience of caring for a relative with dementia but you can't really ring them up in the middle of the night. I go out with friends once a month and I don't want the night to be dominated by what is going on. It isn't all hard though.

Yes I've been lucky to get the POA in place and the carers coming in which came about by default as District nurse had come to see relative to take bloods and a lot had been going on. I got a little upset and she asked if she could contact a colleague in social services. They rang me and that was hard to meet the guy. I also contacted the carers centre (manager had suggested to me to go) I went to the centre and chatted to a worker which was great to offload I still haven't got the morning care situation sorted as it would be good for the carers to give the meds prompt putting eye drops etc.

My relative has been prescribed a different drug now to try for a month. I discussed the need for my relative Datscan with the nurse when she did a home visit. She will discuss my concerns with the doctor.

I am looking at some sort of daycare, activities or befriending service for my relative and would love for them to have some more social interaction hopefully. Not sure how it would work but no doubt there will be a way around things. I feel guilty that my relative isn't getting out like they used too. I am meeting the Dementia support worker the social worker next week. My relative has other health issues at the moment too so trying to keep an eye on the things that need to be done.

One good thing that has happened since my relative fell on a wander and had to to to A n E. After a visit to practice nurse to check a small wound, followed up with a visit from Community matron- is that nurses are going to come to the house when bloods need to be taken. My Relative can be classed as housebound. This is one less thing I have to worry about getting my relative to a community hospital for bloods which are open in the mornings only. As you will know it can take a while to get a person ready, then into car then walk to building as parking can be hard.

Sorry for going on. I am the one that usually sign posts helps others in my job and find it hard to help myself to care for my relative at times. I feel for anyone who does not have any support in the community.

I sing in a choir but have missed a few sessions. On Monday I went to the coast instead for a short walk and to watch the sunset which was wonderful.. I used to do a lot of walking at the coast where I would mull over things as I walked. I would love to get back to my walks with the club but would need care for my relative and other relatives to spend more time with them. I could not leave them for a whole day.