Feeling pathetic and questioning my ability to cope!

[Allypally67]

Hi All,

I am new to all this (AD and forums) so please bear with me!

My mum was diagnosed with AD 6 weeks ago, although she herself had thought there was something wrong 2 and a half years ago!
The doctor at the memory clinic suggested mum went on donepezil 5mg a day for a month then 10mg a day. Since then we have not had any contact with the specialist or a GP ( a dementia nurse is supposed to be contacting us after 6 weeks but not heard anything yet!).
Since the diagnosis mum has seemed to be depressed (understandably!) and is constantly saying she doesn't feel right. when asked in what way she just says she is so very tired. She seems to sleep well at night, gets up quite late (9.30-10) but says she feels like going back to bed. Sometimes I persuade her to go out for a walk, when the weathers brighter, which she seems to enjoy and has even suggested walking a bit further on warmer days! However as soon as we get back home she sits in the chair and starts nodding off. Quite often she will say she needs a lie down and goes upstairs to bed and falls asleep for 2-3 hours! She will still want her supper and start getting ready for bed about 10pm and seems to nod off as soon as her head touches the pillow!
Could this be the donepezil or is it just progression of the disease?
I know she is in the early stages but I am finding it difficult not to lose my patience when she keeps saying the same things, showing no interest in any housework, keeps putting things in unusual places etc.
It is just me and mum no other relatives/partners/close friends. I live with mum and work part-time. My work colleagues have been very good and put up with my moans and have offered shoulders etc. but I don't like to impose too much as they all have their own lives and families.
I am feeling so pathetic as I am finding it so difficult now and know things are going to get much worse. Is any of this normal? Is there such a thing?
So sorry to waffle on I was only going to ask about the tablets!
If anyone has read all of this thank you!!!

 

[Aisling]

Hi All,

I am new to all this (AD and forums) so please bear with me!

My mum was diagnosed with AD 6 weeks ago, although she herself had thought there was something wrong 2 and a half years ago!
The doctor at the memory clinic suggested mum went on donepezil 5mg a day for a month then 10mg a day. Since then we have not had any contact with the specialist or a GP ( a dementia nurse is supposed to be contacting us after 6 weeks but not heard anything yet!).
Since the diagnosis mum has seemed to be depressed (understandably!) and is constantly saying she doesn't feel right. when asked in what way she just says she is so very tired. She seems to sleep well at night, gets up quite late (9.30-10) but says she feels like going back to bed. Sometimes I persuade her to go out for a walk, when the weathers brighter, which she seems to enjoy and has even suggested walking a bit further on warmer days! However as soon as we get back home she sits in the chair and starts nodding off. Quite often she will say she needs a lie down and goes upstairs to bed and falls asleep for 2-3 hours! She will still want her supper and start getting ready for bed about 10pm and seems to nod off as soon as her head touches the pillow!
Could this be the donepezil or is it just progression of the disease?
I know she is in the early stages but I am finding it difficult not to lose my patience when she keeps saying the same things, showing no interest in any housework, keeps putting things in unusual places etc.
It is just me and mum no other relatives/partners/close friends. I live with mum and work part-time. My work colleagues have been very good and put up with my moans and have offered shoulders etc. but I don't like to impose too much as they all have their own lives and families.
I am feeling so pathetic as I am finding it so difficult now and know things are going to get much worse. Is any of this normal? Is there such a thing?
So sorry to waffle on I was only going to ask about the tablets!
If anyone has read all of this thank you!!!

Talk to your Mum's GP. Yes you are finding it difficult and doing everything on your own. It is awful. Maybe your Mum is depressed. Tell her GP the full story and also how you are feeling. May need her meds reviewed. Am just guessing. Has your mum lost interest in doing things and is her lack of energy recent? My OH takes meds for Alzh and depression.

My contact with some professional is almost useless ( GP is excellent ). Heard today that
OH is signed off on his home Liason Nurse ! Apparently he will get another one.
News to me !! She didn't bother telling me. Could have been my fault as I ask questions!!


Sending you virtual hugs.

Aisling

 

[jaymor]

It is very early days for you and it is normal to feel so overwhelmed by it all. It is a life changing diagnosis your Mum has had and it is going to impact on you too. Please remember everything is not going to fall apart over night. Take each day at a time.

Have you sorted out a Lasting Power Of Attorney for both finance and health? You need to do them whilst your Mum has capacity to understand what she is agreeing to. Once they are in place you can put them away and forget them until you need them. They will give you both peace of mind that when Mum cannot, or does not want to deal with her finances you can take over and will be authorised to do anything she would have done whilst well. The health one allows you to be involved in her health care.

Look for social events that are specifically for carers, most allow cared for to attend as so many carers do not have help in caring or respite. Alzheimers Society run them as do many Carer's Associations.

Use the forum to get all the help and support you need and when you need to let off steam just come and rant away, we understand, we have all been there.

Take care.

 

[CynthsDaugh]

Hi AllyPally,

When my Mum was diagnosed with mixed Alzheimers and Vascular Dementia she was also put on Donepezil. I describe the effect of the medication on my Mum as 'sending her to bed for two weeks'. She rarely got dressed and would get up early evening, and go to bed about 9pm. Mum has always had a nap in the afternoons but this was a completely different level. As soon as we stopped the Donepezil she returned to her usual self.

If you have any concerns I would suggest trying to call the dementia nurse.

 

[stanleypj]

So sorry to hear about your mum AllyPally. I doubt whether any carer has not felt, at some stage, that they can't cope. We mostly get by and TP is a massive help.

In answer to your question, both the dementia and the drug are capable of causing increased drowsiness. If you google donepezil you'll see that it more often causes problems in getting enough sleep but it can also cause drowsiness.

I think you should chase up that dementia nurse visit. You will find that there's a lot of chasing up that has to be done. Then you can ask them about the donepezil.

Do you know about the Admiral Nurses? Many people find them very helpful, either face-to-face if you have them nearby, or on the direct phoneline.

 

[Allypally67]

Thank you Aisling, Carmar and Jaymor,
Sorry I was having a bit of a "moment". I really appreciate you all taking the time to reply .
I am in the process of filling in forms for LPAs and AA as suggested by the Dr at the memory clinic. We were also introduced to someone from the AS, who gave us a folder with a lot of information.
It just feels a bit like they've said "this is your diagnosis, here's a load of leaflets now get on with it!" I know we were asked if we had any questions at the time but, although it was half expected, we were sort of shell-shocked and couldn't think of anything. Then after a while and the reality really sinks in it seems so overwhelming!
I know we have to take it one day at a time but in order to be practical sometimes I also have to think of the future and that is when it seems so difficult!
I will take your suggestions on board and try to get more organised and contact the GP and see if I can get those assessments.
Thanks again for replying, I feel so alone sometimes!
Allypally x

 

[Allypally67]

Thanks to CynthsDaugh and Stanleypj,
It is so good to get replies. I really appreciate people taking the time.
As I said in my last reply I will take on all suggestions. It is good to know you are all out there and I'm not the only one with these problems and feelings (although I wouldn't wish this on anyone!) and I am well aware that a lot of you have much worse to deal with.
I will get on to the clinic about the memory nurse and try to ask questions this time!!
I am going to try to write some down so I am prepared!
Thanks again. I would like to send (((hugs))) to you all.
Allypally x

 

[Grannie G]

Hello Allypally

It might help you to take a look at the following.

http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

 

[Allypally67]

Thanks GrannyG,
I have actually read that and I am trying to follow those suggestions which do obviously make sense. It is early days and I AM learning! I am just finding it very difficult at times .
I really appreciate all advice so thank you.
I am actually feeling much better today and much less alone thanks to all the replies
Thanks to you all!!!
Allypally x

 

[netsy22]

Tiredness

Try asking your mums GP for a complete check up - my mum was found to be low in iron which makes you feel very tired. She had bad side affects with donezepil (hallucinatory dreams), so she stopped taking it. How old is your mum?

 

[Allypally67]

Thanks Netsy,
My mum is 80 but has always been fit and active for her age.
I will certainly ask the GP about iron levels when we get to see him.
Sorry to hear of the side effects your mum suffered on donepezil that must have been distressing for both of you.