Is getting a diagnosis important?

[Mums helper]

hi, I'm new here but have been learning from all your posts on the forum.
my sisters and I have been moving in with mum for a few weeks at a time to look after her for the past 3 years. She walks and talks but cannot do anything for herself (although she thinks she is totally fine). I feel like a puppet master as I talk her through most actions like dressing her, helping her sit down, the stair lift is a brand new experience every day, etc etc. I'm sure you know what I mean.

2 years ago I took her to the memory clinic for assessment. I think it was a new doctor as he had few people skills. He had a huge form in front of him and after about 7 questions, she got everyone wrong. I could see her getting very agitated but was holding herself together. I asked him if there was much more as she was struggling and hadn't got any questions right, he said yes. I said again mum was upset and he asked me if we should stop. I suggested he ask her and she said it was making her feel stupid. End of appointment. She shouted at me all the way home and was argumentative for days after. Last heat we were invited back. I rang to see what would happen and was told she would need to go through the form. I spoke to the doctor and he reviewed her file and decided she didn't have dementia!

We manage ok. We have private carers overnight and a couple of afternoons as she cannot be left unsupervised.she does not like strangers and is not a group joiner. The GP can't help with medication or services as we'd have to go through the memory clinic. I'm curious, Would having a diagnosis make any difference?



Sent from my iPad using Talking Point

 

[marionq]

hi, I'm new here but have been learning from all your posts on the forum.
my sisters and I have been moving in with mum for a few weeks at a time to look after her for the past 3 years. She walks and talks but cannot do anything for herself (although she thinks she is totally fine). I feel like a puppet master as I talk her through most actions like dressing her, helping her sit down, the stair lift is a brand new experience every day, etc etc. I'm sure you know what I mean.

2 years ago I took her to the memory clinic for assessment. I think it was a new doctor as he had few people skills. He had a huge form in front of him and after about 7 questions, she got everyone wrong. I could see her getting very agitated but was holding herself together. I asked him if there was much more as she was struggling and hadn't got any questions right, he said yes. I said again mum was upset and he asked me if we should stop. I suggested he ask her and she said it was making her feel stupid. End of appointment. She shouted at me all the way home and was argumentative for days after. Last heat we were invited back. I rang to see what would happen and was told she would need to go through the form. I spoke to the doctor and he reviewed her file and decided she didn't have dementia!

We manage ok. We have private carers overnight and a couple of afternoons as she cannot be left unsupervised.she does not like strangers and is not a group joiner. The GP can't help with medication or services as we'd have to go through the memory clinic. I'm curious, Would having a diagnosis make any difference?



Sent from my iPad using Talking Point

The procedure was a memory test at our GPs surgery. He referred us to the Memory clinic and I prepared my husband by explaining that there were new drugs which could limit his memory loss. In fact once diagnosed he was judged unsuitable for medication. He had a brain scan which showed shrinkage of the brain and an ECG to see if his heart was up to dealing with the drugs.

Once all this was in place we then had a Link worker for a year who sorted out Attendance Allowance which can be up to about £80 a week. Once this is established the dementia patient pays no council tax so if they are living with a relative who does pay then 25% is knocked off the monthly cost.

So there are financial benefits to diagnosis. I also found that a Dementia Advisor from Alz Scotland kept in touch with me about groups and events we might enjoy. The best of this is I feel confident that should I need advice I can phone her and she will do her best to help.

Try to show your Mum the positive aspects of being open and honest about her condition.

 

[smailes]

Unfortunately I think in order to get the right medication she needs a diagnosis. They can't just give medication out. Is your mother on any other meds? There may be a Conflict. If you didn't have a good experience with the last memory test you are within your right to request to see someone else.
I agree to an extent that a diagnosis isn't the bee all and end all but sometimes it does help so they can tailor the services you may require.

Roz

 

[Beate]

I really don't understand how some people end up to be doctors. You should not have had such a bad experience at the Memory Clinic. They should be more understanding. Request another test. Be adamant that she needs a proper diagnosis. Write a letter stating everything your Mum does which is out of the ordinary - he should NOT rely on what she tells him.

As has been said, if you want access to medication, you need a diagnosis, although depending on what form of dementia it is, sometimes no medication is given, and it is debatable how successful those meds are.

You do not need a diagnosis to access help from Social Services or charities, and you do not need it to apply for Attendance Allowance although it does help to have as much documentation and medical reports as possible for that.

You have the right to an assessment for your Mum and a carers assessment for yourself to find out whether you should be getting more help - be it Day Care, sitting services, more carers coming to the house, telecare... if you don't ask you don't get.

 

[Mums helper]

Thanks all.
I think she is too far advanced for any medication. She has limited kidney function so taking any medication is risky for her. Sometimes she is aware something is not right and we talk about her dementia, but she doesn't remember. she gets lost in the house she has lived in for 60 years several times a day. Sometimes we are in a hotel or school, and usually it's just after the war

We have sorted out attendance and carers allowance and have power of attorney.

I spoke with Social Services who are willing to look at providing carers to drop in 4 times a day, but I'm afraid that any new people to visit or speak to will set her off into huge agitation and she is peaceful and happy most of the time. I can't take the stress of her being upset again. as she cannot be left unsupervised for more than 5 mins, drop in carers are not much help.

I do feel lucky that she is usually pleasant to be around. It's tiring but I do get to take a break some afternoons, so I count my blessings.



Sent from my iPad using Talking Point