Hi all
I'm here as I feel I need somewhere to just write it all down. SOmehow it's better than in my own diary to know someone is listening. Since 2015 I have been forking out for a therapist as I have long term problems with depression and trauma, so that has been a great support since recently loosing my dad. But it would be good to communicate with others who have lost someone and experienced how that has affected them.
We lost my father just before Christmas. He had been fighting lewi body dementia for at least 6-8 years (diagnosis was never clear, it may have been around longer). It was a terrible time and so difficult for all the family. Myself and my sisters dont have a very good relationship with my mum as she has NPD which is complicated as she is delusional and unaware of her behaviour and its impact on us. It wasn't until about 3 years ago that i really started working on this issue and am now in long term therapy to help work through that. I have suffered from depression for at least 22 years and am fairly sure a big part of this is about how I was treated as a child (and now).
Dad was a very gentle man and it was dreadful to watch him enter the stages of dementia as it took his mind. Early on just confusion, loss of cognitive ability, then terrible and vivid/violent hallucinations. These eventually lessened as he entered a much more distant state and gradually we 'saw' him less and less often as the dementia buried him. Mum tried to keep him at home as long as possible, but probably too long. I dont blame her for that. Such a difficult moment to decide to send someone to a home for any reason, especially if they are not able to decide themselves. But he had a terrible accident on the stairs (I was there with the carer, awful head injury, traumatic experience), and that was the catalyst. We found a great home. It was an alarming moment, but it was a relief too - to know wonderful people were looking out for him. Sometimes I would visit and he would be asleep, or just blank. Very occasionally (VERY occasionally) I would get a glance or a smile that seemed like him. This was worse really. It was so awful to see him suffer. The worse he got the calmer he seemed to be though. We had a number of false alarms during his last year. Admitted to hospital for infections. Each time he would come back less strong. But he was strong physically. Just mid 70s, physically well. We had no idea if he would be with us for 10 years or 1 or what. He had left us, and yet he was still there. We were unable to think of him as we had known him as he was like he was. That was the dad we would love and support.
Then at the end of nov just gone I got a call early in the morning. Mum telling me he had been taken into hospital again as the home coulndt make a decision on his condition and he wasn't breathing well. I jumped in the car and drove south, thank ful for a flexible boss. It was another infection, but more than that, it was the moment we had been told about. Once he stops swallowing on his own, that is it. You can't feed someone through a tube who has zero quality of life. How can you. This was our decision to make, but we had made it at the last admission 3 months earlier.
What I never realised, until it was happening, was that this decision is accompanied by a decision to give him no fluids too. They don't word it this way, and they dance around the issue, but it is assisted dying. Of course that is illegal in the uk, but that is exactly what it is. And it's dreadful. You stand over your suffering father, his chest full of gunk, unable to breath properly and his body depleted of nutrients and fluid, and you wonder if you should help him, give him a chance to survive. But survive to what end. To live as an empty shell, confused by your surroundings, the waking dreams in your mind and unable to tell the difference between being hungry or needing to go to the loo.
So all we could do was listen to the advice of those around us and trust them. Everyone was encouraging us to take this path, it was very clear. So we took him back to the home, and we stayed with him. All three daughters and mum. Mum didnt want to be there. She had a life time of practice of pretending to be something she wasn't so she had no idea how to behave or be true to herself. We tried to say to her that she didn't have to be there if it was too hard, but she saw that we wanted to be, and that meant she must compete.
I felt lucky that i was able to be around. I wasn't necessarily wanting to be there at the moment he died, but i wanted to keep him company. I didn't know I would feel like that. Each day I had to try and work out how i felt. My sisters too. They were rocks.
There is so much unknown. How long can someone live with out water. They tell you 3 days. Turns out it's 9 when you are nails like my dad. Dreadful. Watching someone become more weak and drawn. You have to believe that the cocktail of drugs going into his system stops him from feeling unwell or uncomfortable. I could see that wasn't true for the first 4 days.
One of the wonderful nurses had great instincts and experience. With her help and our own feeling we knew the night he would go. Between us we decided we didnt need to stay there. I'm glad i didn't. We said goodbye for the 100th time. But I knew i think. I can still feel his dry skin on my lips from that last kiss I gave him on the head. He went at 4am. They didn't tell us until 6. I think that they didnt see how it could benefit us to be up in the night.
And then comes the weird bit. He's gone. We knew he was going. We had known for 9 days. We had known for 7 years. He was my 77 year old father. I was going to loose him some day as I will go too and loose others. But dementia is peculiar. You loose the over and over again. You loose them and they are still there. You are helpless to making them feel better while they are still with you. You dont know how long it will be or how they feel.
So he was gone and then comes all the admin. Mum had already been talking about it which I didnt like but was her way. She had been talking about life after dad for some time. I dont blame her. But I find it hard to understand her. (Mum was unkind to dad. Before he was officially ill I wondered if their marriage would last. She was so bitter and unpleasant towards him. I understand with my own struggles with depression that it is complicated and to do with her own problems, but I hated the way she was towards him. When he was diagnosed as being depressed and later officially with dementia, she couldn't accept it or get her head around it. She would snap at him more, be so impatient with his unusual or confused behaviour. We tried the analogy of 'if you have a broken leg you dont shout at someone when they cant walk to you' - but nothing helped. it's like she would 'forget' he was ill. All of this was dreadful to watch. She refused to make the changes in the house that would help him. He couldnt cope with clutter or shadows or confusing patterns. The house was full of them. Some people would even have moved perhaps. But no, she came first. "didn't we understand how she was suffering". Of course I felt for her, but it was hard to take her side inwardly with the way she treated him and her blatant disregard for his welfare. Yes she got carers in, but she just used them for her woa is me story telling. Im not sure they were really for him. It was all part of the NPD that we have been working to accept).
So the funeral was organised. Mum didn't understand that we were suffering too. I tried to support her but was too busy protecting myself from her poisonous behaviour. She even went against our wishes at the tiny family funeral. The one thing we asked not to happen she lied about and included in the service anyway, so we didnt know until during the service. This was really hurtful at such a difficult time. But she made it all about her.
After Christmas we had a large thanksgiving service. The past walked through the door. Neighbours from my childhood, family friends, dad's colleagues.It was all very odd, and i just sort of cruised through in a blur. They were all gone so soon. How can you remember someone over 3 hours who has been around for 77 years.
Because i have been very unwell with depression through the years I was all too familiar with some of the feelings and physical and emotional responses that have been affecting me. I don't really know how to tell the difference between grief and one of my dips. I was just starting to make progress in the autumn and have been trying to have a relationship (im 38 and have many failed relationships due to some serious emotional problems), this one is now suffering due to the added confusion of loosing dad and all that it drags up.
In some ways it was almost like a parting gift from dad. 'Permission' to be depressed felt like a relief from the stigma in our society. It was ok to cancel on friends or behave a bit out of sorts or to say 'im not ok' as people understood why that might be. Normally that is not as easy. even I can't understand my own depression a lot of the time.
I'd love to hear more about what other people have experienced in terms of grief. Have you pushed loved ones away? Found it hard to function? Has anyone else lost a parent to dementia 'the two deaths'?
Its impossible to tell for me whether i am feeling little towards my boyfriend because i am having problems, or if im just not with the right person. My therapist tells me that the complicated issues I have with intimacy due to being raised by an emotionally abusive mother and emotionally absent father are all going to be heightened by loosing my father. I wave between wanting to disappear and not to have to react respond or deal with another person, to needing the support and the companionship. Most of the time id rather be alone, and this is not a new feeling. It has lead to the end of all my relationships, not just romantic ones. Only one long term friendship has truly survived.
This is unlikely to be to do with loosing dad, but right now perhaps it is. A confusing time.
Thanks for listening everyone and much love to all those suffering. Hold in there. And if in doubt... go and be in nature. It solves everything for me.
