We are now at the end of our journey and it's heartbreaking to let go. I gave up work last February to move home to help mum provide full time care for my father. He had been officially diagnosed with vascular dementia 3 years prior but realistically (in seeing his actions) he should have been diagnosed possibly 5 years prior. From last February he was constantly walking and getting up and dressed up to 4 times a night. It was exhausting. By end of April I was physically showering him and helping him dress. Dad was also physically disabled having spent 2 years in hospital as a child with osteomylitis (he had one leg shorter than other). Due to body casting his right leg was also seriously deformed so he walked with a limp despite wearing a built up shoe). He was still walking in April but the sound his bones in hips and legs made was horrible to listen to (brittle dry bones rubbing and clicking). By June we had to get a care package in place to help wash him. In July he was prescribed a morphine patch as his legs were in so much pain. Within a day of wearing patch he was unsteady on feet and stopped eating. I removed it 2 days later as he was vomiting and couldn't risk him choking in his sleep. By September it was evident he was moments away from coming off his feet. We had been requesting an OT visit for 3 months. He was sleeping on a hospital bed with basic mattress but we needed an air pressure relieving mattress. The district nurses had been visiting every other day so were hands on in ordering other bits of equipment to help us (forgot to say we had an alarm mat in place from April). End of September dad's eating was poor (approx 7.7 stone). I took him to the bathroom to change his pad on 29th September and he went off his feet. I managed to get him onto the wheelchair and when mum arrive home we transferred him to bed. He lay for nearly 5 days but the pressure wounds had already started as he was still on basic mattress. On 5th October he was admitted to A&E with pneumonia and transferred to another hospital for 4 weeks. He had a grade 4 pressure sore on tailbone/sacrum and left heel and a grade 2 on right heel. The sacral wound was horrific. I won't go in to detail as you can research. The hospital trained me on dressing his wounds and he was released home on 1st November under "tlc". They said he was within 12 months and I said he was within 3. This was a difficult time for mum and brothers. I had already read up on so much research so had some understanding but they felt I was being the grim reaper and that dad could last year's. 2 weeks after coming home dad developed a fever. I called out of hours who told me to let him go. They agreed to send a Dr and we inserted 2 paracetamol suppositories. Dad had a uti. The next day after more suppository insertion during night, he recovered alert and able to eat. We nursed him through 3 more infections to 22nd December and then transferred dad for respite. Mum and I both shattered. On 30th December we got the call to say he was being taken to hospital. His temperature had spiked the day before and now very low. As of today dad is still in hospital and thankfully our straight talking Dr has told us we are probably within the last week's. Dad hasn't eaten in over a week. He is on a drip and in dreadful pain. We have agreed to trial the morphine patch again. Anything now as long as he is in comfort. My heart is absolutely exploding right now. My father is one of the kindest, sweetest and most honest person you would ever hope to meet. He is just bones. He doesn't and never has complained, moaned or made any vocal displays of discomfort. He is so childlike and looks at you with his gentle eyes. I just want to cradle him all the time and tell him it will be all right. We would love to be able to bring him home to pass peacefully. We will meet with our Dr next week and see where we are but as the Dr said things may have moved on from then. Please say a prayer, not just for dad, but for all who are in their last moments. Let all have ease in their passing as this is the cruellest way to die. I thank God I had the privilege to care for my father.
Sharing the end of our journey
- Thread starter Little A
- Start date
@Little A I'm so sorry, for all you and your dad have been through, and for this dreadful time of waiting. Not wanting it to drag on for your dad's sake, and yet, not wanting to be without him either. There will be many here who understand exactly what you are going through, and will be thinking of you, and holding your virtual hand in these awful days and nights. please do feel free to keep posting, if it helps. This is a safe place to offload. xx
There's nothing selfish about your tears for his illness and suffering. But I understand what you mean.
I am so sorry it is a horrible time for you all. However the Drs should be able to keep your dad pain free. My dad was allergic to morphine severe reaction which would not have helped achieve a peaceful and comfortable end and at end of life in his NH after a stay in hospital the nurses injected an alternative which did the job well...sorry I don't know what it was called. So ask the Drs about this if he has an intolerable reaction to morphine...you may find however as his body is coming to end of life and therefore changes are taking place he may not now have the same reaction as before. Cry as much as you need to...nothing selfish about having a reaction to caring so deeply for your dad. Wishing you strength and sending a hug
When my dad was dying he couldn’t communicate, but I said to him, there’s nothing you need to say, Dad. We love you, and we know you love us, and what more is there to say? It is so hard...but holding his hand, loving him, crying when you need to, is all you can do now. I do trust that you get to bring dad home, if it is possible, that you have peace about it, if it is not...and that your lovely dad has a peaceful passing.
My thoughts are with you too at this such sad time. So many of us have experienced what you are going through and is just so heartbreaking and I just keep wondering what my lovely mum did to deserve this awful illness. She passed away at the end of November and for me it was a blessing that she did not suffer years of this illness but I miss her terribly and just wonder how I will get through my grief. TP has been a great outlet to share our emotions so do keep posting. Although we are not with each other in body we are all here for each other virtually. Be strong and let the tears flow xxx
Hello littleA (my grandaughter was always known as littleA) , please Don ever think of your tears as selfish. Your tears are part of your grief, sadness, love for your dad, probably exhaustion. Many of us here just 'understand'. I lost my mum just a month ago and it's still raw, but she was a bag of bones at the end and I was relieved that she passed fairly quickly in the end. Your dad knows you love him, ad you know he loved you, you just want what's best for him now.
I wish you peace. Cry as you need to but don't ever feel guilty. I sobbed all the way through mums funeral from the moment the hearse arrived to the moment we got to her wake, I didn't think it was possible. Others wait for the tears and they come later. Still other never quite find their tears. Accept them when they come as part of your life moving on.
I wish you peace. Cry as you need to but don't ever feel guilty. I sobbed all the way through mums funeral from the moment the hearse arrived to the moment we got to her wake, I didn't think it was possible. Others wait for the tears and they come later. Still other never quite find their tears. Accept them when they come as part of your life moving on.
Your post was so sad it made me want to cry, the bit where you describe your Dad looking at you with gentle eyes. I am heading towards the end of life, perhaps more slowly, with my Mum, so I wish them both a peaceful and pain-free departure.
Thank you all so much for your support. I am so sorry for the loss of your loved ones and those still on your journey.
Dad was mainly unresponsive to us yesterday and very clammy. Thankfully no temperature. He seems to have reacted well with the morphine patch but by last night he was starting to squirm and grimace. Today he did open eyes briefly but there was no familiarity in his eyes. He just looked so sad and he felt a lot cooler. I know this may sound strange but I would give anything to be looking after his care needs. One nurse did allow me to redress his heel dressings on Friday and I'm so grateful for that. Just going back to sit with him for a while. I feel for my mum, she looks lost but trying to be strong. My brother's are tied with work commitments and are both clearly wanting to spend as much time as they can with dad but can't. We are a tight family despite the odd barney. Dad never showed favouritism but loved each of us strongly. He was very much a best friend to us and thankfully I could have told him anything. He never once tried to talk me out of anything but always offered a balanced view. I know I lost that part of our relationship a few years back, but with his presence that was still enough to help guide me on decisions. God this is so hard. How do you deal with feeling so helpless? I feel like I can't even support mum as I'm so focused on dad.
Dad was mainly unresponsive to us yesterday and very clammy. Thankfully no temperature. He seems to have reacted well with the morphine patch but by last night he was starting to squirm and grimace. Today he did open eyes briefly but there was no familiarity in his eyes. He just looked so sad and he felt a lot cooler. I know this may sound strange but I would give anything to be looking after his care needs. One nurse did allow me to redress his heel dressings on Friday and I'm so grateful for that. Just going back to sit with him for a while. I feel for my mum, she looks lost but trying to be strong. My brother's are tied with work commitments and are both clearly wanting to spend as much time as they can with dad but can't. We are a tight family despite the odd barney. Dad never showed favouritism but loved each of us strongly. He was very much a best friend to us and thankfully I could have told him anything. He never once tried to talk me out of anything but always offered a balanced view. I know I lost that part of our relationship a few years back, but with his presence that was still enough to help guide me on decisions. God this is so hard. How do you deal with feeling so helpless? I feel like I can't even support mum as I'm so focused on dad.
Thinking of you all. I hope you can find a way to support each other through this difficult time.
I've been reading through some people's posts and it's so so sad to read that some have got to the stage where they've had enough and just want it all to end. I'm not criticising. It's all relative. Just sending good thoughts out to all going through their journey tonight xx
Since last Thursday up until yesterday dad had been mainly unresponsive and anytime he did open his eyes there was no recognition, nothing. Yesterday when I walked in he looked at me and smiled! He held on tightly to both hands and tried to speak (his voice is a whisper and he can't form any words). Last night he seemed in a lot of pain but again kept hold of my hands and sometimes he stroked my arm. One of my brothers arrived and I moved back to let him have some time physical contact with dad. I asked the nurse if the Dr could possibly see if there was any other pain relief that could be given. My brother and I were having a general chat and dad followed both of us and smiled a few times when we mentioned others. After my brother left I went to say goodbye and he just wouldn't let go. I told him I was going to try and bring him home again. From what I've read, this alertness is called "rallying"? I'm just so grateful for whatever caused dad to respond to us as it felt he would leave us with feeling alone. We will be meeting with the Dr tomorrow to discuss where dad will be moved to. I desperately want him to come home but it's mum's decision and I have to/will respect it.
LittleA, does your mum live alone? I lost my husband to dementia over two years ago now, and once he had settled in his Nursing Home, I always knew I didn't want to have him home to die. Not that it would have made me nervous or anything like that. But I need to go on living alone here, and I didn't want those memories here all the time. You know - "this is the room where he spent his last days. This is where he died." My dad, who died 17 years ago of leukemia, did die at home. It was very hard for mum. She completely gutted and redecorated the house almost immediately, including changing the furniture, to try and erase the memories of the sight of his hospital bed and all the equipment.
I do understand your longing to bring your dad home. It would take a lot of care in place. At the moment, you have the hospital staff on hand. At home, there would be most likely carers coming just four times a day, and a nurse calling now and then. Everything else would be down to you or your mum.
I do understand your longing to bring your dad home. It would take a lot of care in place. At the moment, you have the hospital staff on hand. At home, there would be most likely carers coming just four times a day, and a nurse calling now and then. Everything else would be down to you or your mum.
Less than an hour after I last posted the hospital called and sent for us. When we arrived he was on oxygen and his heart racing. They gave us 48 hrs. My brothers relieved mum and I to get some rest. I've just had 2 hrs sleep and going back. When I told him earlier mum and I were leaving and that we loved him he opened his eyes and tightened grip. His breathing is bad and there was a rattle. God please let him find peace soon. He is in pain and so frail. The nurses are amazing despite demands of other patients.
Thinking of you all LittleA and your family. Praying for a peaceful passing for your dad. X
