Worried about my Grandad.

[Lmh1977]

Hi this is my first post. My grandad has vascular dementia and has been in a nursing home for 3 and half months. He has had a diagnosis since last april/may. He was hospitalised a few times for infections and delirium and then they diagnosed vd. He was cared for at home for a while but he became unsafe in the night due to wanting to get up and then falling. My nana was caring for him at night but it became too much. He has had a few rough patches but he seemed to get strong again but the last 2 weeks he has got worse. He is unable to weight bare properly and it takes alot to get him to the toilet. He has lost his appetite and eats very little. He sleeps for most of the day and night now. But when he is awake he can become very agitated. We have had a couple of hospital visits due to dals but he seems to have little falls regularly. It is very upsetting to visit him and the constant dread of the phone ringing makes me feel sick. I'm not sure at what stage grandad is at but reading things he seems to have deteriorated alot but very quickly. Not really sure on what to say or do when I visit him and his constant pained look in his eyes is awful. This illness is so unfair. He is now having bouts of diarrhoea and I'm concerned that he will lose even more weight. Is this what to expect with vascular dementia. Sorry for the long message. I am thinking of every loved one who is dealing with this awful illness.

 

[Selinacroft]

Hi Lmh
I am sorry to hear of your Grandfather's recent decline. I thought I should reply as it was only a few weeks ago that I was in your shoes searching for answers and comparisons wondering where Dad was .
Dad had got to the stage where he was falling at night trying to get to the commode next to his bed and would wander off to the bathroom instead . It was becoming unsafe to leave him alone and so he went for respite for a month in residential care. During that last month he ate one or two surprisingly good meals but soon ate less and and less. About 8 days before he passed away, he stopped eating meals and perhaps managed a mouthful or two of soup for 2 or 3 days and then struggled with even that. About 7 days before he passed he choked on his medication and his swallowing action had started to go.
I know, having browsed this forum that some take longer in this final stage.
It is a hard thing to watch but all you can do is be there and don't worry about looking upset in front of Grandad- it will just show him how much you care for him.
You might get some helpful information if you google the term "End of Life" as it is still something that you never hear people talking about.
Wishing your grandfather a peaceful passing when his time does come and you the strength to be there for him when you can.

 

[Lmh1977]

Hi selinacroft. Thankyou for taking the time to read my post. I am so sorry for your loss and hope that you have all the good times to remember. I am struggling with all the different emotions and sometimes seems very overwhelming. I have read alot of posts on this site and don't feel so alone. Sometimes I just need to get my feelings out then I can start again. I so wish he could find his peace and not suffer anymore. It sometimes feels hard to remember him when he was well but I try. Thankyou again. Thoughts are with you and your family x

 

[Shedrech]

hello @Lmh1977
welcome to TP
it is comforting to share experiences with folk who appreciate what you are going through - so keep posting
maybe find a few photos of your grandfather and you taken over the years and put them on display, so you have a reminder of the times you spent together

 

[Lmh1977]

Hi thankyou for you reply. I don't have a relationship with my parents so my grandparents are everything to me. So I suppose I'm a lot more involved than most grandchildren. Feeling useless is the wosrt. We just celebrated his 90th birthday at the beginning of December and he was fab that day. My screen saver on my phone is of him. Can't really take anymore photos now as he is so frail. Thanks again for your message x

 

[love.dad.but..]

What a very blessed grandad indeed to have a loving caring grandchild such as you. Seeing the decline in my dad last year that brought him to end of life is painful and the feeling of not being able to help becausecthetecisnt much you can do tears you apart...but even if you don't feel that you are helping in any practical way because he has declined beyond that stage....you are...by visiting..chatting to him as though he still understands and knows you are sitting with him...encouraging him when appropriate...telling him how loved he is...touching his hand...all these things help to comfort your grandad and hopefully he is being kept comfortable and painfree. My two adult grandchildren continued to visit their grandad up until the end and although very painful and upsetting neither have any regrets and can remember their grandad as the months pass with less upset that the dementia causes more now happier memories.However...also make sure you get rest, eat and do some things for yourself when not visiting

 

[Raggedrobin]

Of course it is upsetting, it is so deeply upsetting and it is clear you care very much about him. If you have concerns about him struggling you could have a word with the manager? It may be that he is agitated because he is in pain (but not necessarily so). Re the bathroom, sounds like time they toileted him on a commode. I would suggest you ask them to get the GP to check on him, it mayb be time for him to have a change to medication or other interventions to make him more comfortable.

I am so sorry for your situation, these are difficult times for us.

 

[Lmh1977]

Sadness is today's feeling. Can't really explain why. Waiting for the phone to ring. Waiting for something to happen. Just waiting all the time!! The nights are the worst at the moment. Can't seem to sleep and when I do it's broken sleep so feel shattered.

 

[Raggedrobin]

Those feeling are so common and often referred to on here as a kind of living grief. Because we grieve for the person before they have physically gone, as they are mentally leaving us earlier, perhaps.
Also the sense of waiting is so hard. I hope you try to be kind to yourself and maybe do something silly like watch a film on tv or something that will distract you a little bit. Xx

 

[Lmh1977]

Thankyou Raggedrobin for your message. I've not been posting for long and this site has helped me process some of what is going on. So many people going through the different stages. I feel rotten when I'm not with him but yet feel useless when I'm there. It makes sense about the grieving for them yet they are still here. My grandad has not been the grandad I know for a few months now. It is hard when I have to be with him when he has fallen as he is so vulnerable and lost. The roles seem to reverse and I'm the adult and he's like a child. The last fall was bad and he split his head open badly. He needed stitches and it became very distressing. He really didn't understand what was happening. I watched him sleep afterwards and just felt such sadness for the way he is. I keep remembering the good times when I was young but that can make me sad too. To lose him twice is so hard. I know it's not supposed to be said but I just want him to be at peace.

 

[love.dad.but..]

Thankyou Raggedrobin for your message. I've not been posting for long and this site has helped me process some of what is going on. So many people going through the different stages. I feel rotten when I'm not with him but yet feel useless when I'm there. It makes sense about the grieving for them yet they are still here. My grandad has not been the grandad I know for a few months now. It is hard when I have to be with him when he has fallen as he is so vulnerable and lost. The roles seem to reverse and I'm the adult and he's like a child. The last fall was bad and he split his head open badly. He needed stitches and it became very distressing. He really didn't understand what was happening. I watched him sleep afterwards and just felt such sadness for the way he is. I keep remembering the good times when I was young but that can make me sad too. To lose him twice is so hard. I know it's not supposed to be said but I just want him to be at peace.

You have summed up just about everything that a lot of we carers feel...there is no easy way to know what to do or even if some ideas make any difference but always worth trying and TP is great for asking questions or sharing experiences

 

[Lmh1977]

Heartbroken is how I feel today. Started the day shopping with my friend but recieved one of the dreaded phone calls grandad has had a fall! I was going to see him this afternoon with my nana anyway but it just makes everyone on edge. I went over to the home to find him sat in the dining room but the carers pulled a face and said he was not in the best of moods and would not eat a thing. He was defiantly not in a good mood and became very aggressive. Could not get him to eat and he was convinced he had eaten fish and chips and was too full for anything else. He was so adamant that he had that he became really aggressive and shouted at me. He was also very insistent about going to the toilet but when the carers took him he won't do anything. Then 5 10 mins later he wants to go again. The visit just went from bad to worse and my poor nana was so upset. It is heartbreaking to watch her watch him fade away. He was more aggressive and stubborn today than he ever has been. He wouldn't do anything he was asked. He even threatened to punch me in the nose. He was not my grandad today.

 

[love.dad.but..]

So sorry the day has not gone well. It all sounds very much like one of the days my dad would have...all the things you mention. Assuming there isn't a reason such as a uti which can affect a pwd It is hard to witness and deal with but I found the best thing was just either cut the visit short or leave him to his own space for a little while and go to make a cup of tea. Sometimes his mood had changed when I returned and I stayed but if it was still the same I left hoping the next time would be better. No rhyme or reason why two days aren't alike but then dad's mood could change in the same sentence!

 

[malengwa]

Mum had those more angry moments sometimes in the last few weeks, mainly because she hated the hoist. Once she was bed bound, which was about two weeks n the end, she was calmer and the morphine patches helped with her pain. I sobbed when she was cross and if I left when she was like that I was worried if that was to be the last time I saw her.I just had to keep saying 'this is not my mum'
We surrounded her with photos in the last few months and I made a family book of all the people she knew, but it was only useful for a couple of months. I just talked really, about anything and nothing. I talked a lot about my childhood, as this seemed comfortable to her, and she always had music on so I sang, sometimes she joined in.
yes its horrid, I feel for my dad as he was there every day and I could only get there once a week as I was not nearby. She passed just a month ago, and I'm still lurching between tearfulness and relief that she isn't suffering any more.
draw strength if you can from posting and reading her, knowing that your feelings are not weird or awful, they are just normal, and take each day as it comes. Do you have any other family?

 

[Raggedrobin]

So sorry to hear this Lmh. Can you make sure the home has checked both for urinary infections and also constipation? Either of these can greatly change the person's mood.
With the food, I know Mum would just get so annoyed sometimes with people trying to get her to est and so would I be, is people kept constantly trying to get me to eat, it would drive me nuts if I didn't want to. It may well be that the staff had contributed to agitating him by trying to feed him and sadly you got the nub end of that by also trying to do it. Probably because I am close to the end with my Mum, I feel feeding someone who doesn't feel like eating is not a good idea and letting them not eat, whatever the consequences, gives them some control over their lives.

 

[Lmh1977]

So sorry the day has not gone well. It all sounds very much like one of the days my dad would have...all the things you mention. Assuming there isn't a reason such as a uti which can affect a pwd It is hard to witness and deal with but I found the best thing was just either cut the visit short or leave him to his own space for a little while and go to make a cup of tea. Sometimes his mood had changed when I returned and I stayed but if it was still the same I left hoping the next time would be better. No rhyme or reason why two days aren't alike but then dad's mood could change in the same sentence!

Thankyou for your advice. I have been reading up on things and I am going to ask the home to check his urine output and check for any uti. He has had episodes of retention so I will get them to check that too.

 

[Lmh1977]

Mum had those more angry moments sometimes in the last few weeks, mainly because she hated the hoist. Once she was bed bound, which was about two weeks n the end, she was calmer and the morphine patches helped with her pain. I sobbed when she was cross and if I left when she was like that I was worried if that was to be the last time I saw her.I just had to keep saying 'this is not my mum'
We surrounded her with photos in the last few months and I made a family book of all the people she knew, but it was only useful for a couple of months. I just talked really, about anything and nothing. I talked a lot about my childhood, as this seemed comfortable to her, and she always had music on so I sang, sometimes she joined in.
yes its horrid, I feel for my dad as he was there every day and I could only get there once a week as I was not nearby. She passed just a month ago, and I'm still lurching between tearfulness and relief that she isn't suffering any more.
draw strength if you can from posting and reading her, knowing that your feelings are not weird or awful, they are just normal, and take each day as it comes. Do you have any other family?

I'm so sorry for your loss and thankyou for your reply. I didn't realise so many emotions can be felt all at the same time. I do get very upset but I know it's not my grandad. I wait for the little flashes of him and the twinkle in his eye. It's not as much but when we get it it is truly heartwarming. I'm sort of prepared for him leaving us and I sometimes think quiet deeply about it. I pray he goes in peace and knows he is truly loved. I know it will devastate me but his suffering will have stopped.

 

[Lmh1977]

So sorry to hear this Lmh. Can you make sure the home has checked both for urinary infections and also constipation? Either of these can greatly change the person's mood.
With the food, I know Mum would just get so annoyed sometimes with people trying to get her to est and so would I be, is people kept constantly trying to get me to eat, it would drive me nuts if I didn't want to. It may well be that the staff had contributed to agitating him by trying to feed him and sadly you got the nub end of that by also trying to do it. Probably because I am close to the end with my Mum, I feel feeding someone who doesn't feel like eating is not a good idea and letting them not eat, whatever the consequences, gives them some control over their lives.

Thankyou for your message. I am going to mention the urine output and a possible uti to the home as that would maybe answer his mood change. You are probably right about the food thing. I feel awful nattering him to eat it just seems so important that he does but I have read other articles about the person just not wanting to eat and that's ok. I am going to follow grandads lead with things and let him be. Seeing him so agitated and aggressive today was awful and I want to avoid that. Thankyou

 

[Lmh1977]

Grandad had an assessment yesterday by the social worker and nursing staff. He was thankfully not as aggressive as the day before but they have come to the conclusion that he has defiantly gone down hill and he most defiantly need a more care and help with eating and drinking. He is also on the doctors list and has weekly weigh ins. He has lost 2 kgs since Christmas day and I think this will be a sure thing that is weight will be less at each weigh in. Nana seems to have become more accepting to his deteriation and is now talking about just keeping him comfortable. I think that is the stage we are now at is just one day at a time and asking as he is comfortable that's all we can ask for. This feeling now is such sadness. His quality of life is certainly very low if not none. And each visit is becoming more and more hearybreaking. I have children one of which is nearly 11 and he has been a rock through this. It is his great grandad but it's the only one he has ever known. He has been visiting with me when I go and my grandad was always pleased to see him. My son always greeted him with such live but lately he seems scared to be near him. With grandad getting worse I have had to make the decision that I can no longer take my son to see him. Accepting that they will no.longer see each other is painful for me. It's like grandad has died but he hasn't. It makes no sense!!! Can't say the words out loud to anyone as I don't want to.upset them bit I just he was at peace now. Keeping him comfortable and safe is not enough of a life. I don't pray and I'm not really religious but I've found myself asking for him to just give up and be in peace. Many people say that they hold on for something or someone but I can't understand what. T be honest understanding this heart beak is just not an option. Sorry for the long post. Hope all are keeping strong and they can get rest tonight.

 

[Raggedrobin]

Oh Lmh, my heart really goes out to you. I am not religious either but found myself kneeling by the side of my bed the other night, actually praying for my mother's release. I do understand but there seems ro be no rhyme or reason to how long someone can go on, it is incredible sometimes how the human body and spirit keeps fighting for life.

Re your son, he is very, very lucky to have had a great grandad and it is good that he visited him but indeed there is probably a point where if it starts to upset your son it is not longer a good idea for him to visit. Mum loved it when children visited her nursing home, she would watch them with a smile and absolute fascination. Don't feel bad about their relationship ending - it was always going to have to at some point, sadly but like I said both your son and your grandad are lucky to have known each other and to have had any sort of bond.