Dementia - losing a wonderful Dad

Hi there

I am really unsure as to how to start this, but I have been suffering with depression for some time now. There are a couple of things trigger deep depression, one of them is the fact that my Dad passed away in December 2016 after a long (and heart breaking) battle with Dementia.

Firstly we are a very close family, we always spent holidays together and special celebrations. My Dad was a wonderful husband who simply adored my Mum (as she did him). They met when they were in their teens and were married for over 60 years. I have an older sister, Meryl (60) and a younger brother, Darin (50), I am 55. We had a wonderful childhood, Mum and Dad never had much money but they made sure we were loved and taken care of. We had wonderful family holidays, when Dad worked at Colmans (where he was for over 30 years) we would always pack up the caravette and go travelling around the UK for 2 weeks during the holidays. It was such fun and we always enjoyed each other’s’ company. Dad was a hard working man but he had a terrific sense of humour (pretty much like mine!).

My brother spent a number of years working away and my sister lived in Jersey for 17 years, so I think I was probably closer to my Mum & Dad than they were at the time. I would take Mum & Dad to doctors/hospital appointments when Dad had to give up driving and I always went over on a Sunday to cook them Sunday lunch, time which was very precious to me (and to them).

Meryl moved back home in the late 90’s and lived with Mum and Dad. But she had her own issues and was always quite distant (she had a disastrous relationship and a baby boy (who was adopted) which made her very bitter about many things). Even though she lived with Mum & Dad she never helped them very much and spent most of her time in her bedroom like a spoilt teenager.

We would not see Darin for weeks at a time.

Sadly in his late 70’s Dad had a TIA. It wasn’t long after that that he had to give up driving and I had to take on the mantel of driver, which I did willingly. Dad gradually became worse and had a couple of spells in hospital (both times having a blood transfusion). Each time he came out a little more confused. My Mum later admitted that she had tried to hide from me how bad he had become. We still continued to enjoy our times together and it was when Dad’s health started to fail my sister and my brother began to spend a bit more time with them.

When Dad reached 80 after his birthday party he became very aggressive when he got home and shouted and screamed at my Mum and Sister insisting that he wasn’t 80. The strange behaviour continued. When he was 82 he had a fall and without us realising it he had broken his leg. He was unable to tell us he’d had a fall and it wasn’t until it became impossible for him to walk that we realised something serious was wrong. He was taken into hospital and had a pin put in his leg. The medical team told us that he bones were so brittle they suspected he had cancer somewhere – they also discovered a large lump about his heart which they thought was a tumour. Dad spent 10 weeks in hospital and then came home. We had to have a bed for him downstairs and we bought him a recliner to sit in so he could be comfortable. This was a particularly harrowing time for us. The dementia had really taken hold and he would cry and be so distressed. He tried to get out of the house, my sister came home late one night to find him wandering around outside. We did not have a Power of Attorney in place for Dad and social services stepped in. We were all traumatised and exhausted (I would go over on a Friday night to Dad sit so Mum could get some sleep). My sister and my brother were as much use as a chocolate teapot and seemed to be stunned. I was quite practical and just did what need to be done. Dad could also not get to the toilet so me and Mum would help him. We were all frustrated and some horrible arguments were had – and things said that none of us meant. He would also say some horrible things to us, Mum took them particularly to heart – I tried to explain to her that it was the disease and Dad would never say those things if he was he in his right mind. I am so distressed to think that my Dad heard these. The social worker (who was horrible) then persuaded my Mum to let Dad go into a respite home for a while so she could get some rest. She basically conned my Mum as Dad never came out.

Dad was at the Limes (which was a horrible place but he seemed to enjoy it) for about 10 months. We went to see him every day – I would alternate with my brother in taking Mum to see him. The only good thing is that he knew who we were for most of the time – I never had the heart break of him not know us – and that was down to Mum. She was determined that we would see him every day. He had had pneumonia a few times and we got a call one Saturday morning from the care home to say that he had been taken to hospital and we were to get there as soon as possible. When we got there he was outside in an ambulance and I went to be with him. The ambulance man said they daren’t leave Dad at the care home as he need constant supervision and had a high temperature. It was pneumonia again. Another long spell in hospital for poor Dad where he would drift in and out of consciousness. When he was better he was sent to Larchwood care home. At that time he was unable to walk. He tried to but his legs just gave up on him. He was confined to his room and I can only imagine how lonely it must have been for him. We got him a telly for his room and still continued to visit every day.

On December 10th I went to Christmas lunch with a couple of friends, which I still regret – because I was having a good time and I wish I had gone to see him. My brother went over on 11th and he was pretty out of it. When we went on 12th December I knew as soon as I saw him he was pretty bad and death wasn’t far away. His breathing was horrible and he was out of it. We held his hand and he grasped ours so tightly. I called my brother as I said he needed to be there. Me and Mum stayed until about 9.30pm (the care home asked if we wanted to stay over but Mum wanted to go home) – my brother stayed until about 10.30pm. Once he got home he got the call……Dad had passed away at 11.00pm.

There are several things that still destress me. My Mum was so heart broken, they had never been apart and she didn’t really understand dementia. She is OK now, I know – we still have our moments – but she has pulled herself around amazingly well for an 82 year old with many health issues including diabetes, I am very proud of the way she has handled things. Mum never handled any bills – Dad did everything. So me and Mum gradually had to work our way through the minefield of getting bills and accounts in order.

I wish we hadn’t had all those horrible family arguments in front of Dad, I wish I had spent the 10th December with him, I wish he hadn’t had to go through the trauma of being taken away from Mum. I still think that we could have had him home for another 6 months.

We all adored Dad and we miss him terribly. He was hard-working, kind, compassionate man who gave us so much love. He was my hero and I worshiped him.

There is one thing that I am truly grateful for……before he got really bad we were able to tell him how much we loved him and how much he meant to us.

I am not in a happy marriage and my husband gave me very little support during this time. He told me not to do what I did as I was making myself ill. I would not give up though, I had to do all I could otherwise I could not have lived with myself. I also constantly battle with my weight and this is another things that can make me depressed. My husband is again not very sympathetic and sometimes ridicules me.

I am under the doctor and taking medication for my depression, she thinks counselling would be a good thing and when my line manager suggested this helpline I thought I would message you.
Thank you for listening,
Julie [edited by admin]

Hi Julie,

Welcome to this community. I am so sorry to read about all you’ve been through with your dad’s long battle with dementia. It sounds like this was an extremely difficult and distressing time for you and your family and that it’s continuing to have an impact on your emotional health.

There are a couple of articles on our information page that might be of some use to you. One talks about coping with bereavement and the other with managing long-term grief.

I’m pleased you’ve found this forum to get some support from others who understand what you’re going through. Many members of this community have sought additional support from a counsellor and this may be something that would help you, both in terms of managing your grief and depression. You mentioned that your doctor has said counselling would be a good thing - do you think this step would be helpful?

It’s really important to take care of yourself, be kind to yourself, and give yourself time to come to terms with your loss and the impact it’s having on you. This community is here to support you so keep in touch and let us know how you’re doing.

Please don’t hesitate to get in touch with me if there’s anything I can do to support you or if you have any questions about the site.

With best wishes,
Online Community Manager

1 Like

Thank you so much for your kind words and support Eleanor. I will review the articles you have suggested. Luckily my firm offers free counselling to staff which I wasn’t aware of until very recently. I have 4 sessions of telephone counselling arranged which will hopefully help. It is lovely to have found this website, as it helps to realise that you are not alone.
Thanks again for everything, lovely to see everybody supporting each other.

Hello Julie, your post told so much about your life and family and I am pleased you are having help from a councillor, telephone is better than nothing but if you can see someone it may be better in the long term. I think we all feel some guilt, even when there’s nothing we could have done because we don’t know what the future holds, even in the next few minutes. Grieving is a complicated thing and depression is very difficult to overcome, put then together and it doesn’t put you in a good place. Both take time to overcome and lots of help. I do hope life picks up for you and that you can find things that make you smile.
Blessings S

Thank you Susie123 x It helped so much to share my thoughts and feelings. It also helped to know that I am not alone xxx