Newly diagnosed

[Donkeyshere]

Went to the memory clinic today (I am in the Channel Islands) and my mum in law (partners mother) did the Addenbrookes test she scored 63 - having scouted around the websites it seems this is not good - she is 86 years young! So I thought I would join the forum as it seems as I am her carer (alongside my partner but mostly me) and she lives in a annexe off our house I am going to be in for a bit of a ride! So I thought I'd introduce myself, I felt quite sad after the results although we were pretty certain but did not realise how bad the score was. Just wondered if anyone has words of wisdom at this early stage, thanks H

 

[Shedrech]

good to meet you Donkeyshere
I'm not surprised you feel sad, it's not the best news to receive - you've found a good place to come, though, to share your experiences and gain support

initially I'd say, take some time to breath, your MIL is the same person today she was yesterday, so allow the diagnosis to settle (your MIL may even forget the visit to the Clinic) and gradually start looking at putting a few things in place

you'll want to consider the legal preparations; getting Powers of Attorney in place - and look at care provision

have a mooch around the forum and you'll gradually get a clearer picture
come back and ask about anything that's on your mind

best wishes

 

[Kevinl]

Hi Donkeyshere, welcome to TP
Sorry to hear the news about your MIL, we've all been there on D Day (diagnosis day that is) and it always comes as a shock even when deep down you knew what was going to happen, I've been there twice, once with my mum a few years ago and more recently with my wife.
As Shedrench says get all the legals sorted and do some homework by having a read round on here. No two people's stories are the same, my mum just stayed a bit dotty until the end my wife on the other hand ended up in the back of a police van and is now in a secure unit.
Some, all or none of what you read on my happen to you, it's a matter of going with the flow and reacting to the situation rather than trying to predict what's going to happen. Good luck.
K

 

[fizzie]

Welcome to TP- the lovely thing about being on here is that there is hand holding all the way - especially on the rocky bits xx

I wouldn't be too thrown by scores at this stage - as Kevin says everyone is so different and sometimes the bits of paper don't reflect the person

keep posting x

 

[Donkeyshere]

Thanks for your words

We already have everything in place legally etc even though not really needed at the moment. Had a chat with m-in-law tonight and we chatted about a few strategies on shopping and getting a clock, she was upbeat - it is what it is she said. Its good that we can both be honest and its not the elephant in the room anymore! So whilst it was sad news, its given us something to work on to help her. In her words "I'm dippy but not that dippy yet!" So we are just going to look for the funny moments even in the dippy times!

 

[lacey1962]

alzheimers diagnosis

Hi,

Sorry to hear about your mother in law. It is a shock when you are told that parent has Alzheimers. I went to the memory clinic today with my mother and although I knew she has had this for a long time it was upsetting to be told for sure.
I have told my mum she has memory problems for a long time but never mentioned dementia or alzheimers to her as she has seen my dad get progressively worse over the years and is now in a home . I was cross with the doctor in the memory clinic for repeatedly using the D word and gave us booklets all with Alz all over them. She seemed ok with it all at the time as I am not sure she understood but now at nearly 12.00 have had her up and out of bed for an hour feeling sick and I think she is stressed with all the goings on today.

 

[ZoeandSteph]

My mother's diagnosis

Although we didn't wait too long for mums memory clinic assessment, it took 6 months to get her diagnosis. During this time she was getting steadily worse. On the drive to the hospital I tried to explain to mum why we were going as I was worried that it might come as a shock to her. I was shocked at how blunt the doctor was, telling her that her brain scan showed her brain had shrunk and there were areas of damage indicating Alzheimer's and vascular dementia. Mum seemed completely unfazed though. However, over a month later, during one of her evening 'episodes' she was inconsolable, saying someone had told her she has dementia! The following day all that is forgotten again and she is back in denial insisting there is nothing wrong with her. "How much longer do I have to stay in this hotel?" I'm now worrying how to handle it if it comes up again. Should I try and explain or help her calm down by denying it? Every step of this journey is so painful!

 

[JohnBG]

Denial

That trait of forgetting the very essence of why retaining that understanding of what is going on an hourly measure of how impacted this condition is. My mother can attempt complex aspects while simultaneously being unable to do the simplest of things, where the bathroom is or make a cup of tea.

We are a year+ into this, the POA soon in place, I too am learning overheating Ground hog day enabling me to hone my reply technique plus understanding. We try to deal with what she has rather than what it might be, looking too far ahead would cause anyone concern being honest as well, the SS came to see my mother told her that her desire to drive her car was not safe, although she asks me everyday to help her with it.

As carers we need quality time for ourselves, not to be on call 24/7, some time to adjust to this frenetic lifestyle. TP gives us all a roadmap a working strategy to develop to our individual situation at whatever stage. I have a tentative insight in what the future holds plus planning prior to those changes.

Be kind to yourself a daily challenge.

John.

 

[Donkeyshere]

Update of Newly Diagnosed

Over 6 weeks since my initial post, had the official diagnosis of Alzheimers for my mum-in-law (by default as we are not married but just as good as!). Got her a weekly pill box to help and a memory clock off Amazon - it was a bargain or so I thought! However the memory clock decided to give up after 3 hours so had to send it back - will get one locally instead!

The mum-in-law has started on her meds this week but even in the last 3 months have noticed a difference downhill, its the illogical things that she is now saying that I need to get my head round, for example she had her knees done about 18 years ago but tonight she swore it was 40 years ago.

She goes out to friends on a Wed and Sat but I am changing my work hours to finish early once a week to get her out then as well, I understand the earlier the better for routine,

Its been a strange 3 months coming to terms with it for me even though we are not blood related, so I send out all my praise and good wishes to you who are.

 

[jknight]

Over 6 weeks since my initial post, had the official diagnosis of Alzheimers for my mum-in-law (by default as we are not married but just as good as!). Got her a weekly pill box to help and a memory clock off Amazon - it was a bargain or so I thought! However the memory clock decided to give up after 3 hours so had to send it back - will get one locally instead!

The mum-in-law has started on her meds this week but even in the last 3 months have noticed a difference downhill, its the illogical things that she is now saying that I need to get my head round, for example she had her knees done about 18 years ago but tonight she swore it was 40 years ago.

She goes out to friends on a Wed and Sat but I am changing my work hours to finish early once a week to get her out then as well, I understand the earlier the better for routine,

Its been a strange 3 months coming to terms with it for me even though we are not blood related, so I send out all my praise and good wishes to you who are.

Hiya!
Keep a close eye on the pill box. I thought mum would be fine as she has been on medication for over 35 years (firmly lodged in the long term memory, I thought) I was wrong. She couldn't remember to take her medication and once she took two days worth in one day. I now keep her medication at my house and make sure only one days tablets are available per day. Between, mum's carers & I we make sure she takes them!
Also got mum a memory clock! Worked great except she switched it off at the wall 'because I don't need it on all the time, dear'!!! Got over that, eventually!!

 

[Donkeyshere]

Hiya!
Keep a close eye on the pill box. I thought mum would be fine as she has been on medication for over 35 years (firmly lodged in the long term memory, I thought) I was wrong. She couldn't remember to take her medication and once she took two days worth in one day. I now keep her medication at my house and make sure only one days tablets are available per day. Between, mum's carers & I we make sure she takes them!
Also got mum a memory clock! Worked great except she switched it off at the wall 'because I don't need it on all the time, dear'!!! Got over that, eventually!!

Thanks for that - had not even thought that far about the pill box! Had to laugh today at her comment, I made a salad with boiled eggs, she proudly gave me an egg slicer saying it would make the eggs look bigger - dont think that was the word she was looking for but I just agreed!

 

[Honeydew]

Hello I am new to this forum.

MIL was diagnosed about 1 and half years ago. Long story short my FIL passed away about 6 months ago and my MIL has gotten really bad very quickly. My poor husband has been running himself ragged and his siblings are really no help! (they are to busy and all live too far away!) I finally got him to agree to let me help. This all very strange too me because my sibling are very close and cared for my father till he passed away 3 years ago.
Hubby has 3 siblings the oldest sister lives 20 minutes away. We live 45 minutes away. Other brother lives an hour and half away. And youngest sister lives about 45 minutes away also. The biggest thing is that my husband works 3 shift so he gets home in the morning. After driving 70 miles home. Then he drives out to his Moms house.
I am sorry for this being so long lol! I guess I was just trying to fill you all in. Oh there is more but I wont bore you all!

 

[jknight]

MIL was diagnosed about 1 and half years ago. Long story short my FIL passed away about 6 months ago and my MIL has gotten really bad very quickly. My poor husband has been running himself ragged and his siblings are really no help! (they are to busy and all live too far away!) I finally got him to agree to let me help. This all very strange too me because my sibling are very close and cared for my father till he passed away 3 years ago.
Hubby has 3 siblings the oldest sister lives 20 minutes away. We live 45 minutes away. Other brother lives an hour and half away. And youngest sister lives about 45 minutes away also. The biggest thing is that my husband works 3 shift so he gets home in the morning. After driving 70 miles home. Then he drives out to his Moms house.
I am sorry for this being so long lol! I guess I was just trying to fill you all in. Oh there is more but I wont bore you all!

Hi Honeydew

A warm welcome to Talking Point! You will find a lot of support here!
I suggest that you start a thread of your own as it is likely to reach more people who can offer advice!
You won't bore us! Start a new thread, tell all and the support and advice WILL come.

JK

 

[Peirre]

For the pescription meds I found that one of those automatic carousels worked for me, they have 28 compartments and can be set to dispense at a specific time, or at several times a day. They also only allow the patient to access the meds for 1-5 mins before locking down depending on how you set it. My local SS provided this foc.
As for understanding what's happening (as a carer) I can't tell how much the CRiSP courses (especially Pt1) run by the AS helped me understand what is happening and teaching me to cope with situations.

 

[Donkeyshere]

Bit lost with the jargon!

For the pescription meds I found that one of those automatic carousels worked for me, they have 28 compartments and can be set to dispense at a specific time, or at several times a day. They also only allow the patient to access the meds for 1-5 mins before locking down depending on how you set it. My local SS provided this foc.
As for understanding what's happening (as a carer) I can't tell how much the CRiSP courses (especially Pt1) run by the AS helped me understand what is happening and teaching me to cope with situations.

Hi Pierre
As this is all a bit new to me I didn't even know that such tech stuff was available! Without being rude can you put your post into English! I live in the Channel Islands so our care is different to the UK - so can you advise what the heck is CRiSP!? All we really have over here is Alzheimers Association - not alot else? Thanks

 

[Donkeyshere]

Higher Dose of Meds and Agression

Hi All My m-in-law had her meds upped to 16 mg this week (this is her 2nd month on glaglutamine (sorry for spelling!). But since then she has asked/done a couple of odd things which I am not sure are just due to the Alzheimers or the meds. The first thing she did when she was in the car was shout loudly at some cyclists in front of us to tell them to go in single file (she is usally a little more reserved) then after taking her shopping she asked me if she smelt. She said keeps thinking she smells odd! Is this just part of the disease or possibly due to the meds?
Thanks

 

[Donkeyshere]

Need a small rant!

Apologies but I need a little rant to vent my anger - nothing at all to do with the m-in-law but her other son and d-in-law. They rarely come to see her (we are in the Channel Islands and they have been over 3 times in 10 years) but we were in the UK for my other half's sons wedding and I tried to explain how she is but they really did not care! In the end I just shut up and left them to it or I would have ended up slapping the d-in-law for her negative attitude! but boy I am really cross at their attitude - they neither cared nor tried to understand and have no intention of bothering to come over and see her (its a 40 min plane ride!) Ok rant over back to the positives

 

[Bunpoots]

Hi Donkeyshere

I feel your rage. It's so irritating when people who should care don't care! I've had it with my family for years. It took 6 yrs for them to even admit there was a need to support dad - first with looking after mum who had severe Alzheimer's and diabetes - and now with his own Alz and VaD and heart failure!

So frustrating to know you're wasting your breath talking to them

Hope you're not feeling too stressed. How are you and MIL ?