My dad has forgotten me

[HesterShaw]

:(

I knew it was coming but I can't believe he has deteriorated so fast.
Imagine almost the worst case of dementia you can - that's him. He can't recognise me, can't stand up unaided, can't remember how to put one foot in front of the other, can't cut up his food, forgets where is mouth is so has to be fed, can't work out how to drink his cup of tea, is having trouble swallowing, can't work out how to get into the car seat so he can be taken somewhere, can't say anything resembling words, has double incontinence....everything.

Three years ago, we were having long conversations on the phone, going on long walks, fishing for mackerel on the boat, playing with his grandson on the beach and flying the kite, still driving himself round, singing in his choir, playing his guitar. I was always a daddy's girl. He's only 71.

I won't ask why as there are no reasons. But all I want is for him to die a quick and painless death. How can he go on like this? What makes his eyes open in the morning? He is just a broken down body and mind.

[DrElizabethPlimpton]

I'm so sorry for you. My DF is not quite at your DF's stage yet, but it is only a matter of time. Watching him fade away is heart breaking. Dementia is a cruel disease that leaves only misery in its wake.
OP

[HesterShaw]

I should really qualify that "imagine the worst case of dementia you can" because obviously each case is awful, and at least he isn't aggressive, violent and sweary. He has always had a very gentle nature - too gentle some might say - and he kept that until his personality completely faded away.

[Greenteandchives]

I wrote to you yesterday but it disappeared! I just wanted to say that I feel for you, and know what it is like, having been there with my mum.
It is an awful journey that will not end well. You are grieving now for your dear dad, because he is not really there any more. Is he in a care home, and can you visit? I used to take my mum photos and things she had at home, just so I had something to talk about, even if it was one sided. I just held her hand and chatted away. I don't know if she knew I was there, but I didn't know what else to do. Sometimes you get a glimpse of the person, or a smile.
TBH when she died it was a relief. I had done my grieving. She would have hated to have known what was happening. The awful thing about dementia is the effect on loved ones.

[twentyten]

So sorry Hester. It is heartbreaking to watch. He sounds like a lovely lovely person. It is so hard.

[Mintyy]

I don't know what to say ... just that I am very very sorry indeed. I hope you are all spared the agony of it dragging on too long. 71 is such a young age - for you Hester.

[goshdarnit]

It's the most heartbreaking thing I have ever been through, losing my dad to Lewy body dementia. I grieved for him far more before he died than after, as before the loss was continual, the gradual chipping away of the man he was. The last name my dad ever called me was my mum's name.
I found playing his favourite songs on youtube a way of connecting to him, even a turned up corner of his mouth felt like a triumph.
Look after yourself, its so tough

[CMOTDibbler]

I'm so sorry Hester. My mum is the same sort of age as your dad, and in the same sort of state. It breaks my heart to think of who she was compared to the shell she is now.

[morethanpotatoprints]

I'm so sorry, it must be so awful to watch.
Sending you my best wishes for you.

[musicalendorphins2]

I am so sorry. Mil is almost the exact same. It is like we already lost her. Every once in awhile it hits m again, and hurts all over again.

[HesterShaw]

Thank you very much for your replies everyone. I think only people who have experienced dementia in a loved one can understand the particular sadness of it.

twentyten yes he is/was a lovely person :) Very kind, very patient, as I said very gentle. He was a gifted musician - until recently he would pick up his whistle and join in with his music group when they came to see him and play for him. He loved walking and the countryside and nature and birds - he was a lifelong member of the RSPB.

He has been in a care home since November, but in the last week or so he was got so utterly incapacitated I don't think they will be able to take him back. He was admitted to hospital this morning after a fall out of bed last night, and his bloods are showing some inflammation somewhere - might be his liver. He sounds so very poorly. After discussion with me and DSis my mum has put a DNR on his notes. She asked me if I would agree to aggressive treatment if he turns out to have another illness - I said no way. Do you think that was right?

[CMOTDibbler]

Its a terrible decision to have to make, but I think that its absolutely the right decision to make Hester.

[FujimotosElixir]

the op made me cry,i feel very selfish saying that , there are no words im so sorry,

[daisydalrymple]

As cmot says its a terrible decision to have to make but you've made it from the heart. yet another addition to add to the guilt loved ones feel with this hideous disease.

Your dad sounds such a lovely man. I too have always been a daddy's girl. Dad was diagnosed 7 years ago and finally moved to emi nursing home in feb. He's physically fit but cognition not there. Saddens me so much that my children have missed out on a loving, devoted taid, as he would have been fabulous with them. (Age 8, 6 and 6 months). I cling on to the glimpses we've had.

Just off to visit dad now with ds2. He gets such pleasure out of seeing him as do some of the other residents. I will be thinking of you and your dad and family xx

[foraret]

I think you made the right decision. Not my father but my uncle, he was similar. He was such a good humoured man and even when he was disorientated, confused, upset, worried and anxious he never snapped at my mum.

[HesterShaw]

Thank you CMOT, I think that's right too. I can't bear to think of him having something like chemo. My uncle's dad is 96 and completely senile - but they keep pumping him full of antibiotics when he gets an infection, despite the wishes of the family. Why can't they let him slip away? I couldn't bear that for him.

Daisy glad your dad gets pleasure out of the grandchildren visiting. My dad used to, but then he didn't recognise DNeph last time so we haven't taken him again, because DNeph got very indigant (he's only 4). "You know who I am, Grandad, you know who I am!" he kept saying, and dad just looked mystified :(. But the old ladies love seeing little ones running around. You say "Taid" Daisy, are you in Wales too?

[SugarPlumTree]

so sorry Hester. FWIW you have made the decision I would make in that situation and the decision I would want my children to make for me.

[goshdarnit]

I completely agree with you, sometimes the prolonging of life, and ultimately the prolonging of suffering and misery is cruel and unethical. As an elderly care nurse, sometimes the wisest decisions are made when agreeing to let someone drift away, but concentrating on alleviating any distressing symptoms. I sometimes agree with the old saying 'pneumonia is the friend of the old.' When my dad had his last chest infection, he had two courses of antibiotics before a compassionate GP said 'enough' and he slipped peacefully away with all his family around him. Strangely I remember that time with fondness, as the love in that room was palpable.
I hope your Dad is comfortable and gets back to familiar surroundings very soon.

[daisydalrymple]

Yes am up north, how about you? Must admit my 6 and 8 ye

[daisydalrymple]

Pressed too soon ! 6 and 8 year olds go less now as they're a bit uncomfortable with all of the people who speak to them, one lady tells them off (she tells everyone off bless her), but they've only ever known dad with Alzheimer's so it's fairly normal for them.

[MpowBristolUK]

This answers quite a lot of the questions: blog.careselector.com/5-ways-to-cope-with-the-emotional-struggle-of-caring-for-a-loved-one-with-dementia/

[HesterShaw]

Dad's in south Wales, Daisy near Barry.

goshdarnit I have heard that saying too. He does have pneumonia actually - had a text this afternoon at work. However they are giving him IV antibiotics. What's the point? Do they HAVE to treat someone even if it goes against the wishes of the family and it is against the long term interests of the patient? or does that contravene the Hippocratic Oath?

[daisydalrymple]

We've been asked by the home about dnr but I must admit i am a bit hazy about other areas of treatment other than cpr. I vaguely remember something about an end of life pathway of care am sure it was something to do with Liverpool but I can't find it or recall where I read about it- probably one of the many papers I read fairly early on in the diagnosis when there was time to read up. As the disease progresses you have less time to read it when you need it most!!

[HesterShaw]

The Liverpool Care Pathway? All I know about that is that it is for palliative care and that it has received some bad press.

[daisydalrymple]

Just found what I was thinking of but its not specific to dementia. It's the Liverpool care pathway for end of life care. I must just have remembered the coverage in the press about it at the time, worrying at the time it may have been something we would face with dad, withholding treatment.

[daisydalrymple]

X post yes that's the one. I think I've read so much I've mixed everything up. I remember now reading about it being terrified dad would be denied treatment, but it's not relevant in this context sorry for getting mixed up!