Hello, can’t get diagnosis until lockdown over - help!

[PandoraLin]

My 89yr old mum has recently finished chemo for non-Hodgkins Lymphoma. It looks like she’s beaten it but the treatment has affected her quite profoundly. The hospital consultant wouldn’t discuss it when I asked and my GP ignored me... I’ve since registered with another GP but have yet to see him because of the lockdown.
I’m quite sure that she has some kind of dementia, her personality has changed (she gets aggressive now), her memory is shot (Can’t remember conversations that happened minutes ago, let alone yesterday), gets confused very easily and is flustered when she can’t understand things. She keeps on referring to me as if I’m her sister and gets people in the family mixed up. There’s more but you get the idea.
At the moment, she is getting upset that she can’t find her jewellery, not that she has a great deal but she loved the things she had. I can’t find them. I have turned the house upside down but can’t find them. She keeps getting angry with me, she thinks I’ve stolen them... I most certainly haven’t. I know that Iit’s the dementia speaking and that I should answer her with things like, “we’ll have a look for them in the morning”, etc., but she doesn’t give up. It’s very distressing for both of us.
I’m at a loss as to how to deal with the situation. Can anyone offer advice please? Thank you

 

[Sarasa]

Welcome to Dementia Talking Point @PandoraLin, you'll get lots of help, advice and support here.
I think it might be worth sending an email with all the things you've noticed about your mum's decline in cognition to your new doctor's surgery. They may not be able to do anything immediately, though you might be able to have a telephone consultation, but at least the GP will be aware of your concerns.
This thread has useful tips on how to communicate with someone with dementia
Compassionate Communication. I must say though found it very hard when it first became obvious that my mum had dementia and she was insisting in the face of all the evidence that she was right, specially when it was something such as accusing the neighbours of stealing her things, where I felt it had potential to have detrimental affect on someone else. It's become easier she is now in as care home, and is now mainly concerned as to how her mum is and I find that much easier to lie about.
As to the jewellery, it may have been placed for safe keeping in a very odd place, or it could have been thrown away. It might be worth checking rubbish bins etc. In the meantime just try and change the subject if you can, though I found with mum when she got obsessed by something it was very hard to get her to move onto another topic.
Are you living with your at present, is she living with you or are you just visiting when you can? If the latter it would be worth flagging things up with local social services and the local department helping vulnerable people at this time. I guess she has been told to stay in for three months. Not just her age, but because of her recent treatment. I have a friend in her fifties that's been staying in since early March because of her vulnerability due to Lymphoma.
I'm sure others will be along shortly with more help and advice, but in the meantime read round a few other threads, and keep posting.

 

[PandoraLin]

Thank you! I appreciate your reply very much. At the moment, she is in her own home and I visit every day for between 4 and 6 hours. I do her housework and cook her meals, she can manage a sandwich on her own, though I often find the fillings left out of the fridge ?. The jewellery has been missing for quite some time so bins are not an option, I think she’s more than likely to have put them somewhere ‘safe’. it Could be that that place was the bin but we might never know.
I belong to the local Carers Hub and have been appointed a support person, I get weekly texts to make sure we’re ok. Maybe I should try a phone call.
i like your idea about sending the GP surgery an email, I’ll do that - thank you.
my emotions are in overdrive at the moment, stress/panic/grief/guilt/etc., I’m guessing it will get worse before it gets better?

 

[canary]

I suddenly realised that mum had dementia when she started accusing a dear friend of hers of stealing from her. This delusion is so common in dementia that it is almost diagnostic. What happens is that they start to forget where they put things, dont remember moving them, so are sure that someone else must have taken them. They then start worrying that someone is stealing from them, so they "put things away safely" so the thief wont find them - except of course, they forget that they have done this and think they have been stolen. Have a look around, especially behind furniture, down the back of radiators and placed inside other things. Quite often the "hidden" items are wrapped in tissue, so it is easy to mistake it for rubbish and throw it out (either by you or by your mum who forgets what it actually is). I once found her teeth wrapped in tissue in the bedroom bin. When I was clearing out mums home I used up her tea bags, which she kept in a tea caddy. It was a good thing that I did as I found a heavy gold chain placed in the bottom of the tea caddy with the tea bags on top! I have also heard of valuables being placed in shoes and even in a cereal box, between the cardboard and the inner bag!

Do send a letter or email to your mums doctor so that once this pandemic is over the GP will be able to start the ball rolling.

 

[MaNaAk]

Welcome Pandora Lin,

Please follow Sarasa's advice although I would also suggest contacting you local authority or Citizen's Advice . They may be able to put you in touch with your local dementia friends group. I also suggest that now would be a good time to think about Power Of Attorney as you will need to start managing her finances. That said before dad was diagnosed with Alzheimers the doctor booked him in for a blood test as well as giving him a referral to the hospital. The blood test showed that he was anaemic due to metformin also try to get the doctor to look at your mum's ears because I was told that dad's deafness affected his Alzheimers.

MaNaAk

 

[PandoraLin]

Canary - yes, you’re quite right, it does seem to be something that happens quite a lot. Talking of teeth, I found mums tucked up in a made bed as if they were her hot water bottle! Bless.
it’s the emotions that are so difficult at the moment, it seems that I’m falling short on her care yet deep down, I know I can’t have done more. I miss my mum as she was.
I will write to the doctor tomorrow. Thank you.

MaNaAk - its funny you should mention POA, I’ve already got the ball rolling thank goodness. Just got to wait for it to come through.
We had initially thought that her symptoms were Chemo Brain but it’s getting worse now that the chemo has finished but I will check it out. Thank you.

 

[canary]

I miss my mum as she was.

Yes, thats the hardest bit. Grieving for the person that was, even while they are still with you. There is this compulsion to try and "fix" them and a feeling that if only you did more, you could keep them from going. You cant stop dementia, though - it will take everything that you can give it and still want more, so ditch the guilt and ask for help as soon as you need it.

 

[MaNaAk]

Dear Pandora Lin,

I remember the anxiety I had before dad's diagnosis and I felt completely overwhelmed. Don't feel guilty feel proud of what you have done so far. You will get through everything that dementia throws at you and although you and your mum will have bad days there will be good days. Izzy had a thread called 'Some Days Are Diamonds' which is exactly what some days will be. Also you and your will still be able to laugh together please see my thread 'The Lighter Side Of Alzheimers'.

MaNaAk

 

[Marywary]

My 89yr old mum has recently finished chemo for non-Hodgkins Lymphoma. It looks like she’s beaten it but the treatment has affected her quite profoundly. The hospital consultant wouldn’t discuss it when I asked and my GP ignored me... I’ve since registered with another GP but have yet to see him because of the lockdown.
I’m quite sure that she has some kind of dementia, her personality has changed (she gets aggressive now), her memory is shot (Can’t remember conversations that happened minutes ago, let alone yesterday), gets confused very easily and is flustered when she can’t understand things. She keeps on referring to me as if I’m her sister and gets people in the family mixed up. There’s more but you get the idea.
At the moment, she is getting upset that she can’t find her jewellery, not that she has a great deal but she loved the things she had. I can’t find them. I have turned the house upside down but can’t find them. She keeps getting angry with me, she thinks I’ve stolen them... I most certainly haven’t. I know that Iit’s the dementia speaking and that I should answer her with things like, “we’ll have a look for them in the morning”, etc., but she doesn’t give up. It’s very distressing for both of us.
I’m at a loss as to how to deal with the situation. Can anyone offer advice please? Thank you

I've got same problems with my dad Dr knows him well so did a phone diagnosis so can at least move forward he is a sundowner ok most of day but gets agitated and confused around 4pm Dr gave diazepam just at bedtime so at least get a good night's sleep can't wait for 8pm every night as I get my dad back for a little while stay strong not easy is it

 

[MaNaAk]

Dear Marywary and Pandora Lin,

You have both done very well and you will both get through it.

MaNaAk

 

[MaNaAk]

Dear Pandora Lin,

I don't know whether you ever found the jewellery but one valuable piece of information that was given to me over this forum, possibly from the wonderful GrannieG, was that if something is lost try looking within the eye level of the PWD! This means you would have to think about where they normally sit or the frequented places in their home and see things from their eye level.

MaNaAk

 

[PandoraLin]

Thank you everyone for taking the time to reply - I don’t feel quite so alone now. And, it’s good to know that what we are experiencing is similar to others experiences. I admire you all for what you have coped with in the past and may still be dealing with. This thing doesn’t come with an instruction manual, does it??

The Jewellery Saga has been going on for months now, I’ve taken most of the house apart and have come to the conclusion that it’s probably lost. It’s niggling mum that she can’t find her rings but she has lost the ability to understand that they can’t be found. It’s painful to watch her get upset about it, even more difficult when she accuses me of taking the things. i have to accept that that’s the way things are now and try not to let it get to me. it’s time to stop feeling sorry for myself and just get on with it! ?

 

[Weasell]

Depending how you feel about telling ‘love lies’ could you tell her they went to the jewellers to be made smaller as her fingers have shrunk?
Sadly with this virus the jewellers has shut, and the rings cannot be returned at present.
I had major ‘ stolen rings’ problems. In desperation I put them all on a good quality chain round her neck. This has worked for many months. But if I have learnt one thing it is not to count my chickens!

 

[MaNaAk]

Thank you everyone for taking the time to reply - I don’t feel quite so alone now. And, it’s good to know that what we are experiencing is similar to others experiences. I admire you all for what you have coped with in the past and may still be dealing with. This thing doesn’t come with an instruction manual, does it??

The Jewellery Saga has been going on for months now, I’ve taken most of the house apart and have come to the conclusion that it’s probably lost. It’s niggling mum that she can’t find her rings but she has lost the ability to understand that they can’t be found. It’s painful to watch her get upset about it, even more difficult when she accuses me of taking the things. i have to accept that that’s the way things are now and try not to let it get to me. it’s time to stop feeling sorry for myself and just get on with it! ?

May I suggest that you look at my thread 'Clearing Out Dad's Belongings' to see what I am keeping my eye out for. It's in the 'I Care For A Person With Dementia' forum.

MaNaAk