Hello, I am going through the process of being diagnosed with dementia (early onset). This process has been a very slow process. I am now waiting for my consultant consultation in September (last day of testing was beginning of June). I was self employed but have had to give up work (in April) due to difficulties with speech adn sometimes writing. Due to not having a full diagnosis yet (of what type of dementia) I am stuck in no mans land. I tried talking to Alzheimers group today, but again, they can't do much until I have a formal diagnosis. Most days I am positive but today has been really bad. There seems to be a distict lack of communication from the hospital and consultants. I have been really upset and anxious because I haven't known what is going on. Is anybody else going, or been through, this? What did you do, or are you doing, that has helped direct you in the right direction. Please let me know.
I have dementia... but it is not yet official and I need help!
- Thread starter Divemastergal
- Start date
hello @Divemastergal
a warm welcome to DTP
I'm glad you have found this supportive community as members are thoughtful and sypathetic and will share their experiences with you, though it may take a little while for some to see your thread as not everyone comes here everyday
I helped support my dad, and remember that the time waiting to hear about a diagnosis seemed to go so slowly .. I would say be as patient as you can, though maybe keep a journal of any questions and concerns you have so that you have something to refer to when you get to speak with your doctors (I say this as someone who always remembers a couple of questions only as I'm walking down the street after an appointment)
and don't be afraid to bother your consultant and GP to tell them how you feel and ask what is going on
and come here with anything that's on your mind as it helps to get things off your chest
there is a good lot of information on the main AS site too eg
https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis
a warm welcome to DTP
I'm glad you have found this supportive community as members are thoughtful and sypathetic and will share their experiences with you, though it may take a little while for some to see your thread as not everyone comes here everyday
I helped support my dad, and remember that the time waiting to hear about a diagnosis seemed to go so slowly .. I would say be as patient as you can, though maybe keep a journal of any questions and concerns you have so that you have something to refer to when you get to speak with your doctors (I say this as someone who always remembers a couple of questions only as I'm walking down the street after an appointment)
and don't be afraid to bother your consultant and GP to tell them how you feel and ask what is going on
and come here with anything that's on your mind as it helps to get things off your chest
there is a good lot of information on the main AS site too eg
https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis
I was diagnosed with Alzheimers in February this year. I also found that communication between assessors, doctors, hospital and my general practitioner was abysmal. My general practitioner had not even been informed of my diagnosis when I went to see him weeks later. I am a retired health professional and know my way around the system well. Goodness knows how other service users go on.
I involved PALS and also the Chairman of the Trust (whom I previously worked with some years ago.) Worked wonders. My advice is not to accept things if you are not happy. Make your disquiet (politely) known. One tip - ring and say you are prepared for a last minute appointment if someone cancels. Realistically September does not seem too bad.
If it helps I have found the Alzheimers Society a great help. We had a home visit from a support worker - but I did have a firm diagnosis. Again (sadly) I had to complain when an appointment was missed without explanation, but we are all sorted out now and the worker was great.
I also had a bad day today - three falls altogether, but tomorrow is another day ........
I think what I am saying is either patient or carer - you have to stand and fight your own corner.
I involved PALS and also the Chairman of the Trust (whom I previously worked with some years ago.) Worked wonders. My advice is not to accept things if you are not happy. Make your disquiet (politely) known. One tip - ring and say you are prepared for a last minute appointment if someone cancels. Realistically September does not seem too bad.
If it helps I have found the Alzheimers Society a great help. We had a home visit from a support worker - but I did have a firm diagnosis. Again (sadly) I had to complain when an appointment was missed without explanation, but we are all sorted out now and the worker was great.
I also had a bad day today - three falls altogether, but tomorrow is another day ........
I think what I am saying is either patient or carer - you have to stand and fight your own corner.
Hello @Shedrech, thank you for respnding to me. I know that patience is not my middle name but the process has taken almost 15 months and now that I am not working it is scary. I had tried to ask my GP, she is very good, but the last message I had was wait for Sept! Which, I thought meant for more tests, due to generic appt letter received from hospital. I did finally get through to the hospital (after 5 different numbers!) and they told me that I am actually meeting with a consultant in Sept. Perhaps there is light at the end of the tunnel. Just that little bit of information helped calm me down. Thank you for getting back to me and I am sorry about your dad. Also for the link
Dear @Dunroamin, I am sorry about your diagnosis and that you had a bad day also. As a rule I try to stay positive but some days, just get the better of us. I hope you are doing better now and did not hurt yourself.
Thank you for your information. I tried to look up PALS as I am not sure what it stands for, but there are so many variations of it, I am still none the wiser. Perhaps you could enlighten me! I did call the hopsital and ask if there was a cancellation list, but they don't have one. The only way to change it, is to ask my GP to write a letter. Now I know I am actually seeing a consultant and not just spending another 3-4 hours taking more tests, I will wait for it to arrive and be patient. Thank you for letting me know that the time frame is not too bad. I suppose that when one is in the middle of this situation, it is hard to step back, especially on a bad day.
Like you, I am a verbal (hopefully polite - I tend to work on the dripping tap principal) person. However, what I find now is that I get confused and I forget and can't remember what I do or don't do. I was keeping a journal but now I forget to do that. Oh well, as you say, tomorrow is another day.....
Hello @Divemastergal
The waiting time is really frustrating and it seems most of us have been through it so understand.
What I did for my husband has already been suggested by @Dunroamin. There is no harm in a phone call just to remind people you are there and really would appreciate an update. A wait until September might not be too bad in the bigger picture but it is still a long time when every day seems like a year.
You`ve also had some good advice from @Shedrech so there`s no point in me repeating it. It`s worth repeating one point though. Make as many notes as you can about specific concerns so when you do see a doctor you will have everything to hand.
I know when people are self employed it makes life even more difficult. Do you have anyone who can hold the fort for you while you are waiting?
The waiting time is really frustrating and it seems most of us have been through it so understand.
What I did for my husband has already been suggested by @Dunroamin. There is no harm in a phone call just to remind people you are there and really would appreciate an update. A wait until September might not be too bad in the bigger picture but it is still a long time when every day seems like a year.
You`ve also had some good advice from @Shedrech so there`s no point in me repeating it. It`s worth repeating one point though. Make as many notes as you can about specific concerns so when you do see a doctor you will have everything to hand.
I know when people are self employed it makes life even more difficult. Do you have anyone who can hold the fort for you while you are waiting?
Do you use your calendar on your computer @Divemastergal I find it most helpful for alerts and reminders.
been thinking @Divemastergal and it may be worth your while contacting Admiral Nurses, their remit is to support the carer but they may well have some useful local knowledge for you
https://www.dementiauk.org/get-support/admiral-nursing/
and maybe have a chat with CAB to see if they have suggestions to help with finances
https://www.dementiauk.org/get-support/admiral-nursing/
and maybe have a chat with CAB to see if they have suggestions to help with finances
Hello @Grannie G - I read your posts backwards. I don't have anyone to hold the fort, but I can handle it until September. Then it may get rather strained. Hopefully all will work out though. I will make notes, I just find it hard and I am going to have to train myself to do it, right now I think of something and then I am on to another thing and forget to do anything. If that makes sense? LOL. I am just going to have to carry it around with me. I used to make notes on my phone, but I don't look any more. It just doesn't occur to me. Paper and pen may remind me that I need to do it.
we're here to help each other @Divemastergal
believe you me, your posts will be helping others too, so keep posting with anything that's on your mind
believe you me, your posts will be helping others too, so keep posting with anything that's on your mind
Hello @Divemastergal
If it`s any help, I have a note pad and a pen in every room in the house. If I think of anything eg shopping or phone calls to make or anything else I`m unable to do at the time, I jot it down.
I hope this helps.
If it`s any help, I have a note pad and a pen in every room in the house. If I think of anything eg shopping or phone calls to make or anything else I`m unable to do at the time, I jot it down.
I hope this helps.
