Severe dementia and aspiration bronchial pneumonia

[LaurieRose]

My dad is in hosputal with the above...i can see him slipping away. The antibiotics havent been working and death is predicted soon. They are giving the antibiotics one more go this will be the third...if they dont work this time palliative care will commence. We have been told he cant go back to the nursing home yet as he is too frail and they said the last thing they want is for him to slip away in the ambulance. I dont know if im asking anything here...i hope this oost isnt too upsetting I just had to share...feeling so totally alone. Everyone including me is supporting my mum but i dont feel supported enough...ive just had a few cliches...nothing helps except music. Hugs and warmth off someone close would help but i dont know why i dont really get those. Just to try and end on a positive note i did have some bonding with my dad and mist of my memories of my 16 years with him are happy. We had the same sense of humour and he taught me how to care for people and how to protect myself. He was my strongest influence. We lost him already dur to early demetia at age 62...hes now 74 its been a long and konely journey for him and i think hes probably ready to sleep always. So precious and always in my heart. Xxxxxx

[PNIAuthor60]

Laurie, thank you for the courage in your post. This is a very tough time for you and your family. I am so glad that you were able to enjoy some bonding time with your Dad - what a wonderful legacy he has passed on to you by showing you how to care for people and how to protect yourself.

I'm sorry you don't feel supported, but glad that you came and shared here in this community. I will be keeping you and your family in my prayers.

[LaurieRose in reply to PNIAuthor60]

Thank you so much for your kind words. Means a lot and helps to be able have told someone.

[PNIAuthor60 in reply to LaurieRose]

We're here for you.

[LaurieRose in reply to PNIAuthor60]

thank you it really helps me not feel so alone. xx

[jeffcobb Ambassador]

Laurie; Obviously I don't know your situation but as someone going down the same road as your father, perhaps I can offer a dose of glass is half-full. And I immediately apologize for the cliche...it seems when my LBD is bad and my aphasia (difficulty speaking) gets worse, sometimes its easier to repeat things I have heard (a la TV, movies, books, etc) than translating my own tangled words. Just know the feeling is true from the heart, even if the words are from something else, even a tired cliche. Anyhow the thing I wanted to say is...one way dementia really surprised and messed me up was that ...one way we deal with things like illness is having a strong mental mindset, knowing no matter how bad things seem, they will get better. But I have noticed even bad colds or back-aches can seem unbearable when the dementia makes it so I can't even understand whats happening to me....I am not your Dad Laurie but I know for fact if I was in his position/situation, as I soon may be, I would embrace the end. Maybe I am weird and I do not mean to offend, I just know how I will feel because I already do. I am in no hurry for the end but its nothing to be feared either. Maybe this sounds cliche-like, I don't know, I just know in this very rare and exact instance, he will be in a better place because I know I would. And not talking religion etc either, just......relief.

[LaurieRose]

Hi Jeff

Great to hear from you. I like your words and take some comfort in them. I understand how they can gettangled...i've got some cognitive difficulties and may well go down the same path as my father. I know he found some comfort in watching the news on repeat on sky news. It played the same stories on the hour just adding the latest update.

Dad lost the power of speech three years ago but I think in most of that time he has enjoyed communicating with his facial expressions and holding hands. Up until these last few days where his pupils are fixed we have seen the sparkle in his eyes and the warmth and some of his characteristics remained. After working with patients with different kind of dementia in a memory clinic it's still possible to see the love between the patient and their loved ones. It's just now. The care staff say they notice a difference in his facial expressions when family walk on and chat to him. I think this islovely...its the very last thing to go and by the time it's gone he will be ready to go off peacefully. Thanks for helping me see the glass half full. As for yourself hope you have someone to share your journey with. I've seen that people like to keep a journal while they can and also rummage through a memory box with photos, sweets, scents etc. I could write on and on but realise this is getting long and I'm probably rambling. So I'll close with wishing you all the best.

[jeffcobb Ambassador in reply to LaurieRose]

Laurie;

Cheers for the kind words and you have touched on something that I have been trying to work out since the beginning: non-verbal methods of communicating so that when things seem their worst, I can still show/tell someone I am still "in there".

I have somewhat kept a journal; nothing official or structured exactly, just thoughts when I think of them. One of my problems is in the beginning when things like thinking and writing clearly were easier, I thought I would have more time to write down the stuff I considered important....and then suddenly one day I found that it was not so easy to concentrate enough to write, let alone remember what I wanted to say. Now I fear some of that may be too late. Gawd I hope not.

Just out of curiosity, which memory clinic are you referring to?

[LaurieRose in reply to jeffcobb]

Hi Jeff, your words here are pretty coherent. I would just get down what you can. People who know you will understand and fill in the gaps if there are any.

Body language is an excellent way of communicating up until yesterday my dad was still able in some small way.. I think he may have had a few lucid moments, he even winked at my granddaughter when she joked about my singing. She said raise your eyebrows if you think mum should stop singing and he did....pfft

I've read journals from people telling their stories and sometimes they are disjointed but it adds to the authenticity and the emotion is still there. Some people just do drawings or find photos, whatever brings you comfort is important.

Best wishes x

[Poppygail Ambassador]

Laurie, I'm so sorry that you and your family are having to go through this awful time in your lives. As a child of parents who both passed from complications of dementia I just want to wrap my arms around you, give you a huge hug, and tell you everything will be OK. It is so difficult, impossible really, to let them go when the time comes. But secretly, I felt a bit of guilt because I felt relief for both my parents in the end because their existence had become so miserable for them. With the grace of time, I have come to see this was the only merciful outcome that could have happened and I am glad their suffering is over.

As a current passenger now on the dementia train myself, I would like to second Jeff's thoughts. Knowing how this horrible disease ends, more importantly, how the end devastates the family, i do not dread death. In fact, at this point I see it as relief/release for both myself and my family even if they won't see it that way at the time.

You and your family will be in my thoughts and know you are getting a least a figurative hug from me. Feel free to reach out if you need one one to talk with.

Randy

[LaurieRose]

thank you (((hugs))) back at ya.

[LaurieRose]

Dad passed away peacefully at 4.30pm today. I was told at 4.40pm...went straight to say goodbye I was the last out. He was my rock, my saviour and my mentor. My message to those that remain is never wait till tomorrow to tell your loved ones how you feel about them. We are only on this Earth for a short time and every moment counts. Love and light Laurie xxxx

[jeffcobb Ambassador in reply to LaurieRose]

Young lady, my most sincere sympathies and empathies. Sometimes it feels (as the patient) that as time goes on, it feels like we will die alone, as there is a definite aspect of loneliness to this as it progresses; ask anyone.

In any event, thank you for proving me wrong; it will give me something to hold onto as I walk down that road as well. I don't know and can't know what your fathers' last thoughts were but mine almost certainly be ones of relief, relief and not having to constantly ask yourself "Why?"

[LaurieRose in reply to jeffcobb]

My thoughts are with you. If you want to talk feel free to private message too, please don't be lonely...keep reaching out. People care often more than they can show. Xx