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Dad rushed to hospital, extent of mum's dementia now apparent, desperate for help

Scotsfloat

Registered User
Dec 28, 2015
70
I would say to Mum that Dad needs to rest at the minute but once he's better and the doctor says it ok you will get them together. How they get together can be decided later on depending on circumstances.

I personally wouldn't take her to visit Dad as she may upset Dad, and other patients too and think about how you are going to get her back in to the place she's staying in if she's waiting at the door already? Promise to keep her posted etc but delay any visits for now to see Dad.

Also if she went to see him would she let the cat out the bag about where she is, and how she's not happy there? Put dad first just for now I think.
Thank you for that. You are right; it will upset my dad as he will be alarmed at her decline and likely she will alert him to where she is staying. My mum was a nurse all her life and as soon as she sees my dad, she insists on checking his catheter and starts bossing him about, which is the last thing he needs at the moment. I shudder to think what we would do if she refused to go back into the home. I just feel reassured by what you have said and feel less guilty about the necessary deception. I am learning quickly how to handle the situation with both of them, but there are a lot of times when it just feels so surreal as it is still unbelievably only ten days since this crisis hit.
 

Scotsfloat

Registered User
Dec 28, 2015
70
No I wouldn't take her to visit either but I wouldn't stop visiting - she needs an anchor and there may be times before the psych sees her when you are the only person who can calm her so even if you pop in you will be keeping that bond (at the moment her world is upside down so she really does need someone stable) - take something to do - perhaps some really nice hand cream and give her a hand massage or an old photo album or a card game. When you go leave your coat and things in the car or near the exit so that when you leave you can say, 'just popping to the loo' (my bet is she used to do that to you when she took you to nursery lol), alert the carers so that they can fill the gap, and pop off quickly - that way you miss the trauma and hopefully she will stay calm (ish) for a a bit!

It is so difficult when people have memory loss, they just know there is something wrong but they can't remember what.

Keep your chin up and plod along one day at a time xxxxxxxxxxxxxxxxxxxxxxxxxx
Thanks for your response. Things have changed again with both of my parents. My dad has now got another infection and we don't know what is going to happen. My mum appeared to settle into respite, but constantly tries to meddle with the drugs trolley and keeps hanging round the front door and then on the third night hit two of the other residents out of the blue. I have worked with the home to try and work out a way of handling the situation and realised because she has been a nurse all her life, she wants to take charge. My mum thinks she works there and is helping the others, so we are all now playing along with this and the Home are giving her little (safe) responsibilities and she is responding well to this. She is now clearing up cups and washing up and has a nice little routine, which is helping her settle. I have been taking photos of my dad in hospital surroundings every time we visit him and writing an update from the doctors and saying how well he is looking now and how much better he is getting etc. and these are being pinned up on her bedroom wall. This has been the first afternoon to relax and try and process what is happening since it all started. The strain of trying to reassure both parents one after the other when I don't really know what will happen is taking its toll and I'm in a constant state of anxiety. The care home, hospital, my sister's home and my home are a great distance apart. My brother and sister are taking it in turns to phone my mum and chat every morning so we can have a routine and keep the connection. I am ashamed to say after a particularly draining visit to my dad yesterday, where I felt like I was going to faint because I had been talking and reassuring for so long, I couldn't physically visit my mum when we reached the care home and met the manager outside who passed on the latest photo. Do you think it will be enough to speak on the phone for the time being until I feel more able? My cousin and another friend has visited and it's only been a few days. I feel guilty but am trying to do everything I can without completely burning out and then I won't be any good for anything.
 

DMac

Registered User
Jul 18, 2015
535
Surrey, UK
. Do you think it will be enough to speak on the phone for the time being until I feel more able? My cousin and another friend has visited and it's only been a few days. I feel guilty but am trying to do everything I can without completely burning out and then I won't be any good for anything.
Scotsfloat, I am in awe and admiration of you! Please, please, don't feel guilty about prioritising your own needs. You cannot possibly do everything. Of course you must do only as much as you feel able. Take advantage of offers of help from anyone who can step in to attend to your mum for the time being. Take some time to yourself wherever and however you can; as you rightly say, you won't be any good for anything if you burn out. Take care of yourself. xx
 

AlsoConfused

Registered User
Sep 17, 2010
1,953
Do you think it will be enough to speak on the phone for the time being until I feel more able?
Please cut yourself some slack. You're doing everything you can do - against horrible odds - to help both your parents during this time of multiple crises ... and you're doing it really well.
 

fizzie

Registered User
Jul 20, 2011
2,727
You must have a break. You are really important to everyone and that means it is even more important for you to have a break and keep your general emotional and physical health at the top of your priority list.

You can't carry on at that rate, both are safe, you've made sure of that and the home and the hospital will let you know if there is a problem. If you aren't well you have no chance of looking after their well being and be their advocate.
Take a break, get some sleep, meet up with some friends and arrange a treat for yourself - a really really good treat xxxxxxxxxxxxxxxxxxxx you are amazing but you can't be amazing without a brain break xx
 

Scotsfloat

Registered User
Dec 28, 2015
70
'DMac', 'Also Confused' and 'fizzie' - thank you all so much for all your responses; they were so kind, it made me cry! It is such a relief to have reassurance that I'm doing enough at the moment in the circumstances. Visiting my dad in hospital is hard enough, but seeing the daily decline of my mum as well feels like one step too far at the moment and is too sudden to fully comprehend. I'm trying to take it one day at a time. Many thanks again and hopefully I will now be able to sleep well tonight with a clear conscience! :) xx
 

Scotsfloat

Registered User
Dec 28, 2015
70
I wanted to update my situation and again ask for help from others. It's been another full on week and I had my mother's assessment carried out by the Dementia Team in the respite home on Monday. Unfortunately, she didn't do very well and scored 9 out of 30, which the doctor said indicated a 'severe' level. I am waiting for confirmation of this, but guess this suggests an advanced level of dementia? She suddenly looks very old and appeared to have lost lots of weight. She didn't even register that we were there - in the past we have been greeted with 'Oh hello, have you come to take me home' etc., but not this time. In the test, when she asked about her husband she just talked about her father and didn't mention my dad at all. Has anyone experience of these tests and if so, does a '9' suggest an advanced state? The doctor had prescribed a very low dose of trazodone which had made her calmer, but could this have affected how she did on the test?
On top of this my dad's doctor phoned me on Tuesday with an update about my dad who is still in hospital (since 22 Dec) - his infection is all clear and we had been hoping to get him back to his house by the end of this week with a 3 carer/assessor a day for 6 weeks so we can more accurately see what he needs in the future. The doctor then told me that my dad has now been given a diagnosis of moderate dementia. This has completely blind sided me as I had always thought his problems were purely physical. It's so hard to think that both of my parents now have dementia. I have just come back from visiting my dad in hospital and just can't believe that his dementia is on a moderate level and this makes me realise just how severe my mother's dementia probably is. I am feeling a little bewildered about it all and every day seems to bring another bad surprise. We are still going to take dad home next Monday and see how he gets on with the carers and will stay with him until we know if he can cope. Does anyone have experience of the 'Start' carers that come in for 6 weeks?
Many thanks xxx
 

fizzie

Registered User
Jul 20, 2011
2,727
My mum had a score of 11 on the test 2.5 years before she died, she continued to live independently with a lot of support from us and a lunch club and a morning carer. I think it scores as severe but to be honest that doesn't necessarily reflect how someone functions in the real world so I wouldn't be inclined to worry too much about scores. My ma was fiercely independent and thought the world was crackers and everyone had memory loss, me especially (she kept saying to me 'you need to go and get yourself checked dear, mark my words you've got a problem' lololol. Some days she convinced me).

Sorry to hear about your Dad.

Yes I've had a lot of direct and indirect experience of what we call 're-ablement' carers for 6 weeks post hospital and all the ones i know about have been amazing. Its worth engaging with them if you can, they have a lot of experience or at least ours did. I think sometimes their diagnosis of moderate is what we would have put down to 'old age' in the bad old days (or were they so bad!!). So again if I were you I would try to stay positive and concentrate on things that they can do and how they function because at the end of the day that is more important than a score.

Take care and I hope your 6 week 'start' carers are as good as the ones I have experienced. xx
 

Slugsta

Registered User
Aug 25, 2015
2,760
South coast of England
Scotsfloat, you are doing your best in terribly difficult circumstances! Please give that Guilt Monster (|GM) a poke in the eye with a very sharp stick, it has no cause to bug you.

I'm glad you have managed to get a bit of sleep here and there. Please don't feel bad about prioritising your own needs. You are important in your own right, as well as a carer for Mum/Dad/Sister.

A thought about your notes for Mum - could you or the home copy it so that there is another if/when Mum hides the first?
 

Scotsfloat

Registered User
Dec 28, 2015
70
My mum had a score of 11 on the test 2.5 years before she died, she continued to live independently with a lot of support from us and a lunch club and a morning carer. I think it scores as severe but to be honest that doesn't necessarily reflect how someone functions in the real world so I wouldn't be inclined to worry too much about scores. My ma was fiercely independent and thought the world was crackers and everyone had memory loss, me especially (she kept saying to me 'you need to go and get yourself checked dear, mark my words you've got a problem' lololol. Some days she convinced me).

Sorry to hear about your Dad.

Yes I've had a lot of direct and indirect experience of what we call 're-ablement' carers for 6 weeks post hospital and all the ones i know about have been amazing. Its worth engaging with them if you can, they have a lot of experience or at least ours did. I think sometimes their diagnosis of moderate is what we would have put down to 'old age' in the bad old days (or were they so bad!!). So again if I were you I would try to stay positive and concentrate on things that they can do and how they function because at the end of the day that is more important than a score.

Take care and I hope your 6 week 'start' carers are as good as the ones I have experienced. xx
Hi thank you very much for this, because when it comes to my dad, I find I am thinking along the same lines as you; he still seems to grasp things and remember things but is 88 and frail and a little confused. I have been thinking when we get him home where it is quiet and in a new routine it'll really help him and give him the best possible chance. I felt I was deluding myself about this but actually, yes it would just be down to 'old age' back in the day! The hospital and staff have been great but it is so noisy and disorientating and he is used to a very peaceful home life. He said to the doctor this morning that he felt he was becoming institutionalised by being in hospital and the doctor said this was actually positive as he was aware of where he was and it wasn't his 'normal' environment. My mum, on the hand is a different matter; I'm amazed when you say how independent you mother was as my mother has an iron will and always been in charge (her way or the highway!) , which actually has led to the difficulty in getting her assessed in the past, however, she seems to have no idea where she is and cannot hold a conversation that makes any sense. During her test when she was asked if she knew where she was - she kept saying 'in this chair'. Eventually with more probing she said she was in her (own) home, but it had been divided into 'different areas' ie thinking the care home is her home but all the rooms have 'divided up' in her house. I can't imagine that she could have any independence to be honest, as just seems in her own reality. It seems it is such an individual illness and each person's journey is unique and I guess I am just learning as I go!
x
 

fizzie

Registered User
Jul 20, 2011
2,727
Hi there
Yes I think you are so right about your Dad - there is no way he is even going to perform properly on any test (and as my Mum told one of the doctors 'you young whippersnapper how would you like it if you were my age and someone asked you a load of silly questions, go and ask someone else' lol that was her 'get out of jail free card'. I didn't realise they were testing her on the mini memory test actually and would not have let them because I didn't care about test results and I knew it would upset her. Once your Dad gets home my bet is that after a few days of nurturing he will improve maybe not drastically but he will get better.

You know the things that your Mum is saying are quite logical - they aren't off in fantasy land, she's grasped it and from what she is saying 'home' represents safe and its just been divided up so presumably she feels safe where she is - that's the good news for today lol. You will be amazed at how so many little things suddenly become big miracles in the world of us carers - every little step and every positive or funny comment is a treat :) Welcome to the Club xxx
 

Scotsfloat

Registered User
Dec 28, 2015
70
Scotsfloat, you are doing your best in terribly difficult circumstances! Please give that Guilt Monster (|GM) a poke in the eye with a very sharp stick, it has no cause to bug you.

I'm glad you have managed to get a bit of sleep here and there. Please don't feel bad about prioritising your own needs. You are important in your own right, as well as a carer for Mum/Dad/Sister.

A thought about your notes for Mum - could you or the home copy it so that there is another if/when Mum hides the first?
Hi, yes that sounds likes a good idea and I could run a few copies off for my next visit. The home eventually found out that she was folding them up until they were as small as could be and hid them in her pockets! I felt quite comforted that she kept them with her. I'm trying to get a better balance with things now and just keep thinking that I am doing all I can and their safety and best interests are what are at the heart of all my decisions.
 

canary

Registered User
Feb 25, 2014
13,646
South coast
TBH, the MMSE scores dont always reflect what that person is like. Some people score very high, yet there are big, big problems with the way they are functioning; others score low yet they can cope reasonably well with support.

It certainly sounds to me like your mum is in the severe stage now though. And I am so sorry to hear about your dad too - that must have come as a shock.
 

Scotsfloat

Registered User
Dec 28, 2015
70
Hi there
Yes I think you are so right about your Dad - there is no way he is even going to perform properly on any test (and as my Mum told one of the doctors 'you young whippersnapper how would you like it if you were my age and someone asked you a load of silly questions, go and ask someone else' lol that was her 'get out of jail free card'. I didn't realise they were testing her on the mini memory test actually and would not have let them because I didn't care about test results and I knew it would upset her. Once your Dad gets home my bet is that after a few days of nurturing he will improve maybe not drastically but he will get better.

You know the things that your Mum is saying are quite logical - they aren't off in fantasy land, she's grasped it and from what she is saying 'home' represents safe and its just been divided up so presumably she feels safe where she is - that's the good news for today lol. You will be amazed at how so many little things suddenly become big miracles in the world of us carers - every little step and every positive or funny comment is a treat :) Welcome to the Club xxx
Hi, yes I guess I thought having tests would give me some clarity about what is going on, but is has become patently clear there is no black and white when it comes to any form of dementia, but rather one big grey area. There is no point in putting on a 'label', as everyone's up's and down's on their perilous journey are absolutely unique. My mother is still fairly mobile (with a stick), washes herself, eats (with prompting) and has no incontinence problems, but because of the level of confusion/cognitive impairment, she has been given an advanced stage diagnosis. Reading other posts on this site, I would have thought she would have lost all of these functions before being an advanced state. I don't really understand this - she is 86, so does this mean she may have only a year left or ten years or more? Will she stabilise now or is a constant decline? She is now taking Aricept; they started her on a higher dose, then reduced it and then increased it. This was due to her aggressive behaviour and constantly trying to wake up other residents and hitting them when they didn't respond. Does this drug help her at all or is just to subdue her? Sorry! I seem to be asking a lot of questions! I am feeling nervous as we are due to take my dad back to his house tomorrow and hoping it goes well. xxx
 

Scotsfloat

Registered User
Dec 28, 2015
70
TBH, the MMSE scores dont always reflect what that person is like. Some people score very high, yet there are big, big problems with the way they are functioning; others score low yet they can cope reasonably well with support.

It certainly sounds to me like your mum is in the severe stage now though. And I am so sorry to hear about your dad too - that must have come as a shock.
Yes, I am finding it all very confusing. My dad being diagnosed at a moderate stage perhaps makes me realise how advanced my mother is; If anyone spoke to my dad, who is 88, I am sure they would hardly notice he had dementia and put any small amount of confusion down to his advancing years. We are collecting him from hospital tomorrow and taking him home, so fingers crossed! xx
 

fizzie

Registered User
Jul 20, 2011
2,727
like many people it sounds as though your mum doesn't really 'fit' any category and that her greatest difficulty is the aggression. I can't help regarding drugs as my Ma had vascular dementia and so we didn't have any meds.

Try not to worry too much about your Dad tomorrow, you can't make any adjustments until you get there and can let him settle and just support him in any way you can and see how he adjusts. Like much of this 'journey' a lot of it is guesswork and flexibility. One step at a time, one day at a time for all of you. Let us know how it goes and look after yourself xx
 

Scotsfloat

Registered User
Dec 28, 2015
70
It's been able a week since I posted and that is probably because things seem to have gone from bad to worse.
Last Monday, we took my dad back to his house from hospital with a care package of 3 Start Carers a week for up to 6 weeks with the hope he would get stronger and settle into a new routine. As soon as we got him home and the first thing he did was stare at my mum's empty chair, I began to have grave doubts about whether this would work. Unfortunately, my reservations were proved correct after less than a week. Even though his diagnosis of moderate dementia was only made a couple of weeks ago, it seems his symptoms have progressed at an alarming rate. He seemed confused about everything which initially we thought was him readjusting to being back at home. He had a catheter inserted whilst in hospital, but we soon realised he was doubly incontinent. He wouldn't eat or drink hardly anything and literally had a mouthful of food and would say he was full. He was weighed and was under 9 stone. He is 6ft 4''. He was 9.5 stone just before he went into hospital. He opened his laptop and just stared at it. He got angry with the carers and insisted me or one of my siblings didn't leave his side for a second and became very demanding. Unlike my mother, he seemed painfully aware what was happening to him which is just too dreadful to contemplate. His hands and arms look a little contorted and wasn't sure if this was because he was weak or another dementia sign. He said there was nothing to be strong for now and I wonder if he has just given up. Is it possible to will yourself to die, I wonder. My brother was on 'shift' on Saturday when he noticed blood in his catheter and cut a long story short he was eventually taken back to hospital again late last night. I just don't know where I go from here - he can't go back to his house as now needs 24/7 care, so imagine he will have to go to a care home as well as mum. I am going to discuss with my mum's home, the possibility of them being together but not even sure if that would work. It feels like we are starting all over again. I saw my mum at her care home for an assessment with a social worker last week and was actually pleasantly surprised as she seemed in good spirits and recognised me and my sister and was chatting away about all sorts. This was comforting for us, so I guess at least she is no longer distressed. x
 

BR_ANA

Registered User
Jun 27, 2012
1,079
Brazil
Your father miss your mother. She was with him 24/7. It is a good idea put him on same CH. so they can see each other again and without the stress of caring.

However I don't advice rooms very close each other.

I am glad your mother have found her routine on CH.