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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
Should we tell Mum?

I haven't posted for a while as things have been very hectic and it has been impossible to concentrate on anything. After my dad went back into hospital, it felt as if he was going into the process of giving up. He kept asking the doctors to 'finish him off' and give him tablets. We talked a lot and he decided he felt more like living after a while. He somehow seemed less confused than when he was at home; perhaps not distracted by how things used to be and the fact my mum was no longer there. In the last week, he started to deteriorate at an alarming rate and it became harder and harder to have a conversation with him. I sat with him at the hospital all day yesterday and he was barely conscious and couldn't communicate. I talked all day to him about past holidays and exploits and told him how much he was loved. I was holding his hand when he took his last breaths and passed away at 5.30pm. Although I felt it was going to happen, it was still a shock if that makes sense. I feel in a daze today and have started informing friends and family, who are very supportive. My dad had requested a burial in the small village church and so I am making the necessary plans. Of course, now my attention turns to my mum; she is more in her own world than ever in her care home, believing my dad is either on holiday or 'very busy' at the moment. I am actually wondering what the benefit of telling her about his death would be and also attending the funeral. I feel I need to look at what's best for her and don't want to trigger a decline even further in her dementia by exposing her to the distress of the funeral when, by past experience, she won't understand what is happening. I would really welcome other's view or experiences around this as I want to do the right thing. Thank you.
 

Beate

Registered User
May 21, 2014
11,995
London
Firstly, condolences on the loss of your dad.
Secondly, I think not telling her would be exactly the right thing for all the reasons you already stated. It's going to gain nothing and will just distress her. Let her live in her bubble.
 

Scotsfloat

Registered User
Dec 28, 2015
70
Firstly, condolences on the loss of your dad.
Secondly, I think not telling her would be exactly the right thing for all the reasons you already stated. It's going to gain nothing and will just distress her.
Thank you for that. It is reassuring to hear your comments. I think she would be so confused, it would be unbearable to witness. I have discussed this with my brother and sister and we are all of the same opinion. People can sometimes be so judgmental, but that's easy to do if you don't know or understand the bigger picture, so we will do what's in her best interests.
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
Scotsfloat, please accept my condolences on the death of your father.

I think that you and your siblings should make whatever decision you think is best for your mother. If that means not telling her and not taking her to the funeral, then fine. (I know my mother's short term memory is so bad that I will never again give her news of a death in the family, so have an idea of where you're coming from.) Do what you need to do for your mother, and for each other.

My sympathies to you and your family at this difficult time. I hope you are able to get some sleep.
 

angecmc

Registered User
Dec 25, 2012
2,108
hertfordshire
So sorry to hear about your Dad, honestly, I would not tell my Mum if I was in your position, it would not serve any purpose. Take care of yourself xx

Ange
 

Bigreader

Registered User
Jan 22, 2016
26
Very sorry you've lost your Dad. I was never able to tell my mother I'd lost my own husband as I couldn't bear having to repeat it every time she forgot. It was very hard not to have her sympathy and understanding. Not that that's the same same as your Mum losing her own husband, but I do understand how strange it will feel that you know and she doesn't.

Ignore anyone else who is not involved in the decision making, we know people can be very judgemental, but what do they know?

Wishing you peace and strength for the coming days,

BR x
 

Slugsta

Registered User
Aug 25, 2015
2,761
South coast of England
I am so sorry for your loss. I agree with the thinking that it would not serve any purpose in telling your mum or taking her to the funeral. It would be hugely distressing for her in the short term but she would soon forget. Unless you intend to tell her again and again ( and see her become distressed each time) then I see no gain in telling her at all.

Other people might not agree with your decision but you know the full situation and have your mother's best interests at heart, so you do what you feel is right.
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
Hi, Scotsfloat, I am thinking of you today and wondering how you are doing. I know you have a lot going on, so no worries about responding unless and until you feel up to it.
 

woodbrooklabs

Registered User
Aug 17, 2015
45
Just read your thread. Sorry to hear about your dad.

I hope you are coping and that your mum is ok.

Look forward to hearing from you when you have time and when everything sinks in.xx
 

Scotsfloat

Registered User
Dec 28, 2015
70
It's taken me a while to get round to posting again as things have been so hectic. Thank you all so much for your supportive comments; they are very comforting at a time when things are just so difficult. I have been organising things for my dad's funeral on 4th March which is distressing enough, but my thoughts keep returning to my mother. She only went into a Care Home on the 30th Dec 2015 and we had all been struggling to get used to the idea that she would never return to their home. It's so awful that she is in the Home and unaware that her devoted husband of 55 years has passed away. I totally understand that to tell her is all about what I want and not what she actually needs or is in her best interests. It just feels like such a bizarre situation; in the space of 6 weeks my dad has died and mum moved into a care home and now struggles to remember who I am. It's like I have lost both of them, but my mum remains only in a different form. I have decided I cannot visit her until after the funeral as I'm not sure in my emotional state that I wouldn't get very upset at seeing her, which would only cause distress. My cousin visited her today and took in another old photo album and my mum recognised my dad in one picture. On seeing him she said to my cousin; 'my husband's working away at the minute, but he's coming back tonight.' Just so heartbreaking x
 

2jays

Registered User
Jun 4, 2010
11,598
West Midlands
Heartbreaking. Sorry to read you have lost your dad.

Your mum seems to be "accepting" that your dad is working away, so if you can, I would keep that thought she has when explaining where he is when/if she asks in the future. May I suggest you don't bring the subject up, hard as it could be, unless she does.

So hard, painful times for you xxxx


Sent from my iPhone using Talking Point
 

Crunchy

Registered User
Feb 21, 2016
42
Scotsfloat I've just read this whole thread and your story is so similar to mine, I'm so sorry for your pain and confusion, I'm in the same place in lots of ways.
Bless these proud elderly dads who refuse help and hide how much they struggle to cope, while hiding their own dementia, my dad was just the same. And he died recently too, when we all thought my mum would be the first to go. Have a hug xxx

Given that your mum is a nurse, she may actually cope better with your dad's death than you fear. My mum has a similar scientific background, and she is incredibly pragmatic and accepting that her husband has died, she says all bodies and brains wear out, it's a natural part of life. Like your mum, mine has no short term memory, so I made her a collage of recent photos of my dad, including the most recent one of them both together. Under it I wrote that he had died peacefully in his sleep, with the date, and she told me where to stick it on her care home bedroom so she could be helped to remember. I also took her to the funeral, and she coped with it a lot better than me, and absolutely loved all the fuss and attention from old friends and relatives. I left her a copy of the order of service and the lovely funeral invitation we made too, all of it celebrating his life rather than being morbid and gloomy.

I guess it's a balance between your guilt at keeping it from her and your desire not to upset her, and only you can decide what's best. Look after yourself xxx
 

Stevey

Registered User
Jul 27, 2015
28
UK
Scotsfloat, my heart goes out to you - my goodness, what a time you've had :(

I've been struggling to keep afloat myself with our own family issues but realise just how fortunate we are compared to others. My father too was rushed into hospital last November which triggered a whole lot of stress and anxiety ever since. This happened 4 days before mum was due to go into respite for a week to give dad a break from looking after her.

Since then, dad has had a triple heart bypass and is on the mend, which we are so very grateful for, but he's accepting the fact that mum isn't likely to be able to come home anytime soon. You mentioned the time when your mum had to be left in the care home and it rang bells with me - that moment that we had to bring the arrangements forward (and thank goodness the home were able to accept her earlier) and leave mum there that first night was absolutely awful and heart-breaking.

My sincere condolences. When the time comes I'm sure you'll know what to do with telling your mother, or not as the case may be.
 

Scotsfloat

Registered User
Dec 28, 2015
70
Thank you again for your responses and apologies (again) for my late reply. It seems so many people are in such difficult situations and it's so terribly sad to hear this. Thank you for sharing your experiences.
My father's funeral went as well as could be expected and as my Mother wasn't there we were all able to concentrate on him and made sure he had a 'special day.' The dust has settled now and it's time to turn my full attention to my Mum. She normally always mentions my dad, to say he is working away or on holiday etc but interestingly she hasn't mentioned him at all since the funeral even though she is unaware of his death.
I am a bit confused about the stages of this illness and wondered if any one could help; my Mum seems fairly mobile at the minute with her stick and is able to dress, wash, eat and use the toilet. However, cognitively she is very bad; she has about a 3 second recall. When my dad was in hospital she thought it was her dad etc; she now sees me and my siblings as her 'friends' rather than family and more worryingly, when I spoke to her the other day on the phone, she said my brother was there with her (he wasn't), I got the impression too that she wasn't sure who I was - a community nurse who visited her said she was talking about things/people that weren't there, the nurse said she sounded quite plausible when speaking. I thought my mum had stabilised a bit as she has been in the home 2.5 months now, but when discussing her with the care manager she said her confusion had got worse since she went in there. I am waiting to take her for a CT Scan to pinpoint more accurately what is going on. Can things decline suddenly or is it more gradual?; I felt like she would go on for many years as she is able to wash, eat and was continent even though mentally things weren't good. Am I kidding myself? I know it is impossible to tell what might happen with Alzheimers but do I need to brace myself just in case? I feel I want to know all possibilities so that I am ready as I can be for anything that may happen as couldn't bear it if something happened out of the blue. Is being physically able a good sign? She is 87 this month but has always been fairly active. Any help would be greatly appreciated. x
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
Hi, Scotsfloat, and it's nice to "see" you here. Please don't feel you must apologise for not posting lately; you certainly have more than enough going on.

I am glad your dad's funeral was as good as it could be and hope you had some time with your family.

I think it's very understandable that you are concerned about your mother. I will post some information, if I can find the links, that I've found helpful, but please remember that "stages" of dementia are not always terribly helpful guidelines. I find that on any given day, my mother (73, Alzheimer's, no short term memory) might exhibit symptoms from several different stages. I can work myself into worry about that in no time, so I try hard to keep in mind what I think of, as my mother's current baseline or level of function, and only compare her to herself, if that makes any sense.

You are absolutely right that you cannot predict the future and yes, you will make yourself nuts trying to do so. I know that and can say that, but cannot always do that. I am guessing you might be feeling extra sensitive about all of this because of your dad, which is reasonable and to be expected.

Having said that, if you have noticed a sudden and/or steep decline in cognitive function, physical ability, behaviour, mood, anything like that, then I would run, not walk, to call the GP. It could be anything from some residual "upset" about your dad, to a urinary tract infection, to a cold, a sinus infection, a vitamin deficiency, a TIA, the weather, it's hard to say (although UTIs are a common problem). You are an expert on your mum so if something seems "off" to you, by all means, speak up.

I'll go in search of those links for you.

Best wishes and thinking of you,

Amy
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
OK, here is one factsheet I felt had good information (more comprehensive than the analogous one from the US website): https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=133

If you promise not to get too upset about numbers: http://www.dementiacarecentral.com/aboutdementia/facts/stages

(I am not sure about the provenance of that website.)

I'm frustrated as I'd found a better document but cannot seem to locate it again. I will keep looking. I just hope reading this stuff doesn't make you feel worse.
 

AmeliaM

Registered User
Mar 22, 2016
19
Alzheimers deterioration

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.
 

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