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

Shedrech

Volunteer Moderator
Dec 15, 2012
9,138
Yorkshire
Hi AmeliaM
a warm welcome to TP
I'm so glad that you found the forum and have already drawn comfort from reading this thread - and found, as many of us do, that writing out your own thoughts helps gain a perspective
you are definitely not alone - each one us has our own story, on a shared theme
Reading your story, this stood out for me
She trusted us to do our best for her and its all gone wrong
You have worked so hard to keep your mum safe at home and then realised that circumstances required that she be safe in a care home - it's not what you all hoped for, but it's not "all gone wrong"; it's just gone differently, as it often does in life
your mum was right to trust you, and you have done everything you can - so be gentle on yourself
dad's in a care home now, too - I just take each day at a time - and work on not expecting too much
keep posting
and
best wishes to you too
 

AmeliaM

Registered User
Mar 22, 2016
19
Hi AmeliaM
a warm welcome to TP
I'm so glad that you found the forum and have already drawn comfort from reading this thread - and found, as many of us do, that writing out your own thoughts helps gain a perspective
you are definitely not alone - each one us has our own story, on a shared theme
Reading your story, this stood out for me

You have worked so hard to keep your mum safe at home and then realised that circumstances required that she be safe in a care home - it's not what you all hoped for, but it's not "all gone wrong"; it's just gone differently, as it often does in life
your mum was right to trust you, and you have done everything you can - so be gentle on yourself
dad's in a care home now, too - I just take each day at a time - and work on not expecting too much
keep posting
and
best wishes to you too
Thank you shedreck, much appreciated.

Amelia
 

AmberJade

Registered User
Mar 22, 2016
1
I can't believe what I have just read. What you have been going through is almost identical to my situation with my parents, except it's my mother who had a fall and went to hospital and my father who went into a care home. Both my parents have Alzheimer's. My mum fell and fractured her hip just over three weeks ago. My father couldn't possibly be left on his own so is now in respite in a local (and extremely expensive) care home. Both are pining terribly for the other. As you say, it's absolutely heartbreaking. At this point it's not clear when/if my mother will be able to come home and certainly not clear whether my father will be able to join her again if she can come home. We are looking at all manner of options now. It would be great to talk to you. Is there a way of private messaging on this? I'm new to the site. I do hope you have made some progress with your situation. It's so horrible, I know exactly what you are going through. There's no pain like it. Take care.


Sent from my iPad using Talking Point
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,138
Yorkshire
Hi AmberJade
a warm welcome to TP
it is part of the power of this forum, I think, that no matter how individual our circumstances, someone here will be in a similar situation, so we learn that we are not alone on this journey; takes away some of the isolation
you and your family have a lot to contend with at the moment - so I'm glad you found your way here
do post anything you want to get off your chest - it tends to be an open forum (private messages only after 10 posts) so we can all offer support
I hope you find a way for your mum and dad both to be safe and comfortable
best wishes
 

Scotsfloat

Registered User
Dec 28, 2015
70
And here is one more that is still not the one I'm looking for, but has some additional info: http://www.ec-online.net/knowledge/articles/alzstages.html
Hi Amy,
Thank you very much for posting the links and I shall be looking at them shortly. I think what you said in your earlier post is very true; I was feeling extremely sensitive when I posted as there are times when everything seems to pile up and can suddenly overwhelm me. Also, my cousin died suddenly the day before my father's funeral. He was only 55 and it was out of the blue. His funeral was last Wednesday in the same small village church that my father had his service in and my cousin was buried next to my dad. I thought I was going to be OK but it was truly unbearable.
Regarding my mother, I think I find it hard to work with such uncertainties - similarly to your experience, my mother displays behaviours that span just about all the stages at different times. Her cognitive level would suggest an advanced severe level but physically she would appear well; she gets around albeit on a stick, is able to wash and dress herself without any trouble and still go to the toilet independently. When I asked someone if this was a good sign, I was told 'motion is the last thing to go'. I guess after everything that has happened recently, I just don't want any more sudden (nasty) surprises. Oh well, onwards and upwards!! xxx
 

jugglingmum

Registered User
Jan 5, 2014
5,804
Chester
I may be jumping in at the wrong point here, but I wanted to know what stage mum was at when the proverbial crisis happened over 2 years ago, but have since realised I'm not really bothered as it is what she is capable of and how it has changed in the last 6 months that matters.

she was very agitated with everything that happened and then once in her new place (my mum is in sheltered extra care) she calmed down and seemed to refind some skills I thought lost, although she is slowly getting worse, sometimes the kids notice things and sometimes I do.
 

Scotsfloat

Registered User
Dec 28, 2015
70
I can't believe what I have just read. What you have been going through is almost identical to my situation with my parents, except it's my mother who had a fall and went to hospital and my father who went into a care home. Both my parents have Alzheimer's. My mum fell and fractured her hip just over three weeks ago. My father couldn't possibly be left on his own so is now in respite in a local (and extremely expensive) care home. Both are pining terribly for the other. As you say, it's absolutely heartbreaking. At this point it's not clear when/if my mother will be able to come home and certainly not clear whether my father will be able to join her again if she can come home. We are looking at all manner of options now. It would be great to talk to you. Is there a way of private messaging on this? I'm new to the site. I do hope you have made some progress with your situation. It's so horrible, I know exactly what you are going through. There's no pain like it. Take care.


Sent from my iPad using Talking Point
Hi,
What a terribly distressing situation you are in - I do really feel for you. Before my father passed away in hospital, I asked him several times if he would like me to bring mum in from the home to visit him. He just kept asking me if she would remember him and I just kept saying 'I'm sure she would', even though by this point I was very doubtful about it. I think he read between the lines and said 'it was too soon' and it was left at that as every time after that he became agitated when I asked him. When he first went into hospital which was only 2 months previously, I was taking her to visit him regularly and all was (sort of) well as she remembered him at this point. Things deteriorated so rapidly it was so very hard to roll with the changes; initially I was desperate to keep them together as it seemed unthinkable that after 55 years together this wouldn't be the case. As you say there is no pain like it and I felt in constant agony. Everything changed on a daily basis depending on how well either of them were on that day - we went through a lot of different possible future scenarios based on this; we ideally wanted them to be in a home together, but my mother's challenging behaviour put paid to that as my father was too frail to cope with it. I had just sorted out a care home for my father to go to when he left hospital and it looked like they would live out the end of their lives 40 miles apart which actually made me feel sick. My father gave up the will to live at this point and literally wasted away in a week. Even though I am grief stricken by his death, I can't help but feel a sense of relief that he isn't sitting in a care home staring out the window, thinking of all he has lost. One thing that kept me going was thinking about all the many, many years they had had together and the recent terrible events were just a drop in the ocean of their lives relatively speaking. I really hope things work out the best they can for you, but also try and make sure you look after yourself too and realise there is only so much you can do, as I know through experience, it's very easy to reach burnout point. xx
 

Scotsfloat

Registered User
Dec 28, 2015
70
Hi,

This is the first time I have posted after reading "scotsfloats" thread and the replies yesterday. I have been feeling very desperate as my mum was admitted to residential just before Xmas. Since being widowed at 65 she has constantly battled with bad health, having undergone a triple bypass at 68, survived numerous falls including a broken hip and bruising to the brain. Mum has also suffered from MS since her mid-thirties. However, through sheer determination on her part, she has lived independently with her little Yorkshire terrier, with a very good care package and family support for over twenty years. We have said she has 9 lives!

Unfortunately she started to show signs of dementia hallucinations; panic attacks continuous phone calls, sometimes in the night and despite our best efforts after her latest spell in Hospital as a family we asked her GP if she could be admitted for two weeks respite in to Residential Care. Whilst in respite she flourished but on discharge we were back to providing 24 x 7 care which was costing a fortune for overnight carers. I and my elder sister work and have other family commitments, whilst my younger sister is alcohol dependent and has severe mental health issues.

I am now feeling guilty as it was I who instigated mum being admitted in to a Care Home in the first place as I couldn’t cope with the constant phone calls and texts from the carers whilst undergoing surgery myself. The I fell down stairs badly injuring my ankle which along with the surgery meant I couldn’t visit for 3 weeks. My sisters were really good and sorted everything thankfully. I feel she has deteriorated, to what I would say is late stage dementia, although she has also suffered several infections, which have added to the confusion. The rapid deterioration has been within the last 2 months and I feel she has given up and who can blame her really.

Although mum did say she wanted to go back in to care just before Xmas after another fall and repeated panic attacks, I still wish she could have stayed in her own home, although finances would not have allowed this. At home she was at least with her beloved dog and getting around slow but sure with a walking frame. Since then, unfortunately, her little Yorkshire terrier became very ill and had to be put to sleep although she doesn’t know this. This all sounds like a comedy sketch but unfortunately it isn’t.

She has fallen a couple of times whilst in Care, so now she is just sitting all day in a chair and hardly making any sense. The Care Home and staff are very good but it isnt home. She trusted us to do our best for her and its all gone wrong. I feel we have lost the strong independent fighter that mum was and now she is childlike and totally dependent which is heart breaking to see. I am trying to hold it together and put a brave face on things when visiting but I am dying inside, I haven’t told anyone how I feel and sometimes wonder if I can carry on.

Having read several posts it has given me great comfort to know that I am not the only person going through this and it has made me realise that perhaps there was no option.

Sorry if this all sounds a bit negative, it has helped to actually write it down.

Sincere best wishes to everyone who is struggling through this dreadful disease.
Hi, I am so sorry to hear the situation you are in with your mum and how it is making you feel. You sound as if you are riddled with guilt, but actually reading through your post it sounds clearly like you 'have done the best for her, as she would have trusted you to do'. It's so very hard to accept when things change, especially when it involves the deterioration of someone close to us. You mother had said she wanted to go back to the home, so perhaps she felt it was the best thing, even though I completely understand how you feel about wanting her to stay in her own home as she has always managed in the past. It is such a terrible disease that we have no control over and with the best will in the world it will progress wherever we are, whenever it likes. I am pleased that you have started to realise that unfortunately there was no other option.
Since posting on here since Christmas, I have found it an invaluable outlet for my panic and distress and there is always someone who is supportive and makes me feel like I'm not completely losing my mind! Take care and value yourself and your needs too, as it sounds like you definitely deserve a break xxx
 

MyUsername

Registered User
Jun 15, 2016
1
Same Situation for me!

I am new to this site and would welcome any help as I am completely overwhelmed and don't know what to.
I have had concerns for well over 2 years regarding my mother's dementia symptoms. I have tried to talk to my dad many, many times about getting an assessment so we can all know what is happening so we are better placed to help mum as and when needed. My parents have decided they are quite able to manage without any help and I have been torn between respecting their wishes and trying to do something about it. This has made quite ill. I A crisis has now hit and we are in the nightmare situation I have been so desperately trying to avoid. My dad was rushed into hospital a week ago with a serious infection and is very ill and we don't know when/if he will come home. This has exacerbated her condition and we are juggling staying with her 24/7 as she wanders round the house looking for my dad. She obviously has separation anxiety as she cannot function without him. It is heartwrenching to watch and we feel helpless. Someone has suggested we see her GP and arrange urgent respite care as we need headspace to sort out what is going on with my dad and the minefield of sorting out care for him should he come out as well as trying to find out if bills at their house have been paid etc. I am feeling overwhelmed as if I can't breathe and don't know where to start. Sorry to ramble but wanted to know if anyone knew about urgent respite care and whether it would be available or will the GP think I am over reacting? Mum also gets up in the middle of the night, thinking its morning and goes to the front door as wants to go out. I don't feel I can keep her safe. She is 86 and my dad is 88. Thank you.

Thank heavens I found this site. I have the very same problems with my parents and I have found the replies so helpful. My dad was hospitalised quite suddenly and three hours after he was taken in my mother didn't remember what had happened. I am due to go on holiday very soon and I now know what to do before I go.
Thanks.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,138
Yorkshire
Hi MyUsername
just noticed that this is your first post - and I'm so glad that already you are finding the forum so helpful - you've joined a supportive and helpful bunch :)
 

Scotsfloat

Registered User
Dec 28, 2015
70
Thank heavens I found this site. I have the very same problems with my parents and I have found the replies so helpful. My dad was hospitalised quite suddenly and three hours after he was taken in my mother didn't remember what had happened. I am due to go on holiday very soon and I now know what to do before I go.
Thanks.
Hi,
I have just re-read my original message that you replied to and it reminded me how totally and utterly desperate and helpless I felt when the crisis hit. I really had no idea where to start or where to turn. When I posted my mostly rambling posts on here when I was trying to make sense of things, I always received responses from the most kind and caring people who helped me in an emotional as well as a practical way. I felt less alone as everyone shared their own experiences. It's (unbelievably) six months now since my first post and to cut a long story short, my father passed away in February and after my mother went into respite care on 30th December, she has now settled into the Care Home and is being very well looked after and is eating well. The guilt I felt about this has now passed as I know it is in her best interests, however hard it has been to come to terms with. I am now living a new 'normal', something at one time I thought I would never get to. Life goes on.
Enjoy your holiday the best you can, remember to look after yourself in all the chaos and keep hold of the thought that whatever happens, like me, you will get through it and be able to come out of the other side. xxxxx
 

cloudy

Registered User
Oct 27, 2013
10
Hi scotsfloat,
Just reading through your thread. I had something similar. My mum was healthy all her life and was looking after my dad with dementia at home. She suddenly fell sick on a Friday and passed away on the Monday. That was almost 4 years ago now. My attention was just on dad after that and I made the hardest decision of my life to move him into a care home.i went to visit him 3-4 times a week and he would have a good day one day, then a bad day on another. Unfortunately that care home was not the best (although very pretty) and I got calls a few times in the first few months about falls, broken arms, and them unable to stop dad from walking non stop when he was exhausted and sweating.

Even though he was in a care home, I still had to think about him a lot.

It was only about a year later when he had settled in more that I could start to grief for my mum.
My dads now in a nursing home with people who are better at looking after him.

I felt like I had no support from my older brothers who all lived atleast 2 hrs away. Emotionally I was going through a really bad time with seeing dad on his bad days and also because I still miss my mum.

I found some courses through Alzheimer's society and also a local adult care group for carers of people with dementia. Even though dad is in a home, they still class me as a carer. These courses were really helpful. In meeting and speaking to other people who are dealing with relatives with dementia. And also to help me understand dementia more, how my dad may see or perceive things and how to cope better with the behaviours that come with dementia.

I would strongly recommend these courses and only wished I knew about them 5 years earlier.

Look after yourself scotsfloat. You have done really well to get through what you have been through.

Xxx
 
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Scotsfloat

Registered User
Dec 28, 2015
70
Hi scotsfloat,
Just reading through your thread. I had something similar. My mum was healthy all her life and was looking after my dad with dementia at home. She suddenly fell sick on a Friday and passed away on the Monday. That was almost 4 years ago now. My attention was just on dad after that and I made the hardest decision of my life to move him into a care home.i went to visit him 3-4 times a week and he would have a good day one day, then a bad day on another. Unfortunately that care home was not the best (although very pretty) and I got calls a few times in the first few months about falls, broken arms, and them unable to stop dad from walking non stop when he was exhausted and sweating.

Even though he was in a care home, I still had to think about him a lot.

It was only about a year later when he had settled in more that I could start to grief for my mum.
My dads now in a nursing home with people who are better at looking after him.

I felt like I had no support from my older brothers who all lived atleast 2 hrs away. Emotionally I was going through a really bad time with seeing dad on his bad days and also because I still miss my mum.

I found some courses through Alzheimer's society and also a local adult care group for carers of people with dementia. Even though dad is in a home, they still class me as a carer. These courses were really helpful. In meeting and speaking to other people who are dealing with relatives with dementia. And also to help me understand dementia more, how my dad may see or perceive things and how to cope better with the behaviours that come with dementia.

I would strongly recommend these courses and only wished I knew about them 5 years earlier.

Look after yourself scotsfloat. You have done really well to get through what you have been through.

Xxx
Hi Cloudy,
Thank you for your supportive message. I was very interested to hear about the courses you mention and will look into what I can do. I can understand what you're saying about it being a year before you felt able to grieve for your mum; I feel like I'm constantly running on adrenaline as so much to do as well as working full time. I don't feel like I get a second to be able to stop and take stock of the enormity of what has happened in such a short space of time. I have made a big decision to leave my job at the end of June and take time out for about six months so I can really get to grips with everything and also take time to try and understand more what is happening to my mum, hence the courses you mention will be very useful. I feel quite happy with the Home she is in as I have a good relationship with the manager there and we have worked together to find ways to manage my mum's unpredictable and challenging behaviour.
I wish you all the very best and hope you have better support now after feeling all the responsibility fell to you xxx
 

cloudy

Registered User
Oct 27, 2013
10
Hi Scott
The course ran by Alzheimer's society is called Crisp.

the social workers ( we call them dementia outreach teAm where I am) are helpful too.

Age concern have also been involved at some stage but crisp will be a good starting point for you as it will give you contacts for the resources available and most importantly, meet other people in the same boat. Although everyone is at different stages.

Our Alzheimer's society run support groups for carers with families with dementia every month and that's good too.

Good luck Scot:)