Struggling to visit grandad

[Granddaughter.1]

Hi,

I've just joined the forum. I'm 27 & my 93year old grandad has vascular dementia. He has had it for a number of years ago but was still able to live at home until April this year. Since en he had a fall, was admitted to hospital for a couple of weeks and then to a nursing home: but his mobility and dementia seem to have progressed rapidly and he was moved into an EMI unit 5 weeks ago as the nursing home was no longer able to manage his intermittent aggression and his refusal to eat/drink/take medications/get dressed at that point.
Since he moved into the EMI he has been a bit happier and is taking his mess, eating, drinking, allowing them to dress him & even sitting out of his room which is great! However I'm struggling to deal with the rest of his decline: it seems so quick!
I struggle seeing him looking such as mess: his face covered in food like a child, dribbling, without his false teeth and without any awareness of it. I feel sad for him because I feel he wouldn't like to be seen like that, and it also makes me sad that he's declined to that point.
I find it hard to sit and talk to him when suddenly hardly anything he says makes sense and he doesn't seem to follow most of what we say.
And I'm struggling with distractions of the other residents getting up or shouting as we sit in the day room with him when we visit.
I've been visiting with my mum and sisters for 45 minutes every 2 weeks but start getting really newsy after 15-20minutes and secretly really want to leave then and feel guilty for feeling that way.
The decline just seems so quick and such a shock.

I'd really appreciate any advice/support! Thank you.

I wrote this poem yesterday to express how I feel. Maybe some of you will be able to relate to some of it.

Visiting Grandpa


Your snowy hair hugs your head,
Your glasses frame your face,
You still look up& your eyes still smile,
But arms no longer open to embrace.

Creamy drool trickles from your mouth,
Dried breakfast sticks to your chin,
Unkempt stubble another new feature,
Which has now become your kin.

I put on a smile to hide the shock
At the new facade you possess,
I want to kiss & cuddle you,
But not your milky crumby mess.

I want to talk & know you understand,
To drink in your wisdom &wit,
But yesterday's sense has slipped away,
Now we smile&applease you&twit

I want to waste the afternoon with you,
But sitting there is so hard.
Seeing the half jigsaw left behind,
Concentration hijacked by gentle chaos bizarre.

I will love you always,
Though I struggle to sit near,
I wish you a thousand smiles&peace,
Please know you're very dear!

 

[ggma]

There is no easy answer, by what a thoughtful poem, thank you for sharing with us.

Everyone's dementia journey goes at a different speed and sometimes the decline catches us out and is too quick, but we can not get off.

My daughter lives abroad, and before she left home did a lot with her grandmother, but when she visited this summer, it was really hard for her not to get any reaction, and there is nothing we can say or do to make it better.

Sorry I am not to be a help to you, are you able to talk about how you feel within the family?
How about making your visits shorter, sometimes 15 - 20 mins is enough, I now make my visits shorter as Mum get tired easily, and I find she can not talk to me anymore, but seems to respond to holding my hand.

 

[Norfolkgirl]

Your grandpa

Just want to say well done for him reaching such a good age. I know it's no consolation that you are suffering seeing him like he is but I just want to wish you and your family well.

 

[Butter]

I felt exactly the same about my grandad. He died more than 40 years ago now ( and I was thinking I was still 27 too!) and I am so so glad I went to see him. It was terrible at the time but looking back it helps me to make peace with the fact of life and death. And - I realise now - he knew I was there and he did love me and I would not have missed that for the world. He was glad I was there.
You will find, in the fullness of time, your memory of him will contain a proper balance of him well and happy rather than ill and old. And they are wonderful memories to treasure.

 

[chris53]

A very warm welcome to you Grandaughter1 to Talking Point, much understanding, help and support here, whenever you need it, you will find lots of practical information on this forum including our help line, you seem to be so caring and for someone who is younger you are prepared to visit your Grandpa and adjust to how he is now, which is not easy for most of us to try to learn how to know this very different person! please never feel guilty for wanting to continue with your life, and you must, in regards to how you feel when you visit him in the care home, please insist on speaking to the manager regarding with his face covered in food, and no teeth, and any other worries you may have, do not be fobbed off! he may have got to the wonderful age of 93, and yes have dementia, but he should be kept nice and clean regardless if he is aware of this! the carehome may have a private area you are not aware of, or a garden? do explain your concerns on lack of privacy. Please keep posting, maybe ask mum or your sisters to post here as well, so extra support for them as well.Your poem is really lovely and reflects the warm person you are. Take care - Chris x

 

[kingmidas1962]

I really do understand how you feel. Could you stay a short while and then go for a walk, and meet up with the rest of the family afterwards? Please tell them how you feel - show them your post, if its too hard to say it out loud. They may have already realised, but not said anything. Everyone is different - some people are seemingly unaffected by seeing their family like this (I don't believe this is the case, but they maybe don't show it or feel it as keenly as you do)

Also remember that we can't ever know how someone with dementia really feels - no one has ever returned to tell the tale. It could be that your grandad is content in his own world - it certainly sounds as if he is happier judging by the small changes in his behaviour.

.....and also what an absolutely lovely granddaughter you are to write such a touching poem

 

[Saffie]

I struggle seeing him looking such as mess: his face covered in food like a child, dribbling, without his false teeth and without any awareness of it. I feel sad for him because I feel he wouldn't like to be seen like that, and it also makes me sad that he's declined to that point.

Hello and welcome to TP.
Is it mealtime whan you visit? If not, I really don't understand why the carers have not cleaned the food away from his face. I would not accept that with my husband though I do sometimes have to wipe his mouth a little.Could you perhaps, do this for your
grandfather?

And I'm struggling with distractions of the other residents getting up or shouting as we sit in the day room with him when we visit.

I would suggest going with your grandfather and family to his room. There you can have less distraction and a calmer visit.Would this help?

Your poem is lovely and I think your devotion to your grandfather is wonderful. You have obviously been very close. I'm sure others will be along shortly to give you more help.

 

[rjm]

Hi, I'm sorry to hear that your grandad's decline has become so rapid. It must be quite shocking and saddening to see him so. I think any time you are comfortable spending with him is good. Maybe instead of all of you visiting for 45 minutes you could go in two at a time for 15 minutes. It may even be less confusing to your grandad that way. Please don't feel bad about being uncomfortable seeing him the way he is now, you are far from alone in this.
By the way, your poem is lovely! Thank you for sharing it with us.

Best wishes,

 

[zeeeb]

I would agree that you don't need to feel guilty for only staying for a short visit. Any visit is better than no visit. It is hard, and uncomfortable for us, but I guess it's harder and more uncomfortable for them, so we just have to try to do what we can to make a happy moment. Even if the conversation is dull, perhaps you could read to him, short stories, get a book of short jokes and read them, newspaper articles. Just your presence would make a big difference. A friendly face, a smile, a touch. It all adds up and increases the quality of life, no matter how small it might seem.

 

[Sue J]

Hi No. 1 Grandaughter

Your poem is beautiful.

I wondered when I read your post if you'd be able to take some wet wipes in with you and gently wipe his face, if he'd allow, and if you are comfortable with it - your loving Grandad is still there. I too wondered if there was a garden that you could perhaps go and sit away from all the noise and disturbance. If possible could you speak to a member of staff about finding a quiet area for you to sit.

You don't say if you are able to talk to your Mum and sisters about how you feel, it may help you if you can. They too are probably feeling similar things and maybe together you can find ways of making your visits easier for all of you.

Take care, best wishes
Sue

 

[fluff]

And I'm struggling with distractions of the other residents getting up or shouting as we sit in the day room with him when we visit.
I've been visiting with my mum and sisters for 45 minutes every 2 weeks but start getting really newsy after 15-20minutes and secretly really want to leave then and feel guilty for feeling that way.
The decline just seems so quick and such a shock.

Hi Grandaughter1
You give the impression that you feel guilty about how you feel and really you shouldn't. It is always hard to see someone you love deteriorate like this. It is so much harder when they are no longer really 'there' and cannot make conversation or appear to enjoy your visits much. If you talked about it, probably your mum and sister feel much the same.

My husband (who is old enough to be your father) dreaded visting his mother as she got ill. You have to do it despite your feelings because of love. Because visiting is better than not visiting - and I do agree with others who have said keep visits short. Perhaps even pop in for 5-10 minutes at the start and end of each longer visit your mother makes? Or, if you can, visit more frequently for very short 'just to see you are OK' visits but don't feel you need to stay and make conversation. He will know sombody is visiting who cares and he probably won't have a good sense of time to know how long your visit actually is.

It is really difficult, don't feel guilty that you find it hard, just be brave and find a way to keep visiting.

 

[Granddaughter.1]

Thank you!

Hi everyone,

Thank you so much for all your replies, they really helped! I'm sorry it' taken so long for me to let you know. It was a busy few months.
I was amazed by the support and sense of being welcomed into a community I received here. Your replies enabled me to feel confident about visiting my grandad again rather than fearing it. I used lots of your suggestions: I began phoning an hour or two before I arrived to ask if he could be put into a wheelchair so that I could take him into the quiet room - which enabled me to get less distracted and the staff were so helpful about it. I brought some wet wipes to bring with me. I read him stories from the newspaper - there were a couple of stories I started reading and then suddenly stopped when I realised they should have had a parental guidance warning! And of course I continued to bring my ipad to show him the old family photos which he loved!
He passed away on 17th December after a quick decline over 2 weeks. I am so grateful for how his passing away was gentle, and for the many staff that went above & beyond their duty in caring for my grandad and family. It's touched me so much that I'll write a separate post as I want to encourage others that it can be a gentle process.
Since my original post I have recommended this forum to many friends with relatives with dementia and at his funeral had donations to the Alzheimer's society instead of flowers.

Thank you so much!

 

[rjm]

I'm very happy to hear that you were able to spend some memorable and pleasant time with your grandfather. My condolences on his passing; but as these things go, his sounds like it went well.

Best wishes,