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Dementia’s journey

kindred

Registered User
Apr 8, 2018
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No, we can’t expect people to know or understand if they haven’t trodden this path. I certainly had no idea, and still each ‘stage’ leaves me reeling. People are genuinely kind and well meaning with their platitudes and distraction events, and I’m grateful to them. However, it is, without a doubt, a cruel situation to find yourself unable to visit the person you have lived with for 47yrs when you want, and spend as much time, or as little time with them as you want; It is very, very hard not to be able to have any meaningful conversation with that person any more; It is heartbreaking when they have no idea who you or their children are; It is sad and lonely to sit in the home you have shared for over 35 yrs surrounded by memories, and know that the person will never return. It takes huge reserves of self discipline and control not to feel sorry for the situation that you find yourself in, and not to feel empty, lacking in motivation and unable to focus on anything very much. I feel that there is an expectaction in our society that people should ‘get on with their life’, be ‘resilient’, be ‘strong’ etc. and whilst I don’t want to ‘wallow’ in the situation I do feel there needs to be a realization of the reality that we ‘dementia widows’ face from day to day. In other words the above is our life at present, and yes we do have the ability to change how we view it, and respond to it, but the facts remain. I hope that makes some sense!
How would you like others to treat us? I would have loved to have heard the words can I help you, or let me make you a cup of tea. Kindredx
 

None the Wiser

Registered User
Feb 3, 2020
222
0
What a good question @kindred. I think to have someone really listen and try to empathize, so a chat and tea helps. I find walking with a friend also helps, but it depends on the friend, as I had one the other day say to me “now that you’ve got all this time on your hands you can start that Masters degree that you’ve been wanting to do”. She meant well, but I‘m not even able to concentrate on a TV programme that lasts an hour at the moment! I do think it’s difficult for people to get it ‘right’, and am really grateful to everyone that has got in touch, taken time to talk, and said that they are there any time I need to call on them.
I do find that many people assume that now my husband is in a care home the issue has gone away, or that things are much easier.
 

jennifer1967

Registered User
Mar 15, 2020
4,583
0
Southampton
How would you like others to treat us? I would have loved to have heard the words can I help you, or let me make you a cup of tea. Kindredx
even as my husband is at home, the questions would be welcome. im always touched whenever someone offers help. the saying its better to have 1 willing person than 10 conscripted people is also true
 

Dutchman

Registered User
May 26, 2017
1,219
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73
Devon, Totnes
Thank you everyone for keeping in touch. It’s a great comfort to know there good friends that think of me.

I’ve believe that whatever I’m feeling is ok because otherwise i end up judging myself based on other peoples expectations of how I should be.

This morning , for instance, I’m still in bed ( 08.00) and thoughts run around my brain about everything. I drift in and out of sleep, have little dreams where Bridget is talking normally to me and is normal and then I woke up and realised she not here and I’m alone. It just goes on and on. And I judge myself for not getting up and getting on. When you find yourself on your own there’s no one to encourage you or even tell you what to do ( I need telling sometimes!)

Because Bridget doesn’t know me it’s so so difficult to continue to hold on to the loving connection as it’s all one way. Love needs nurturing both ways but all I get are blank stares. I suppose every day the relationship dies a little more and that’s difficult to accept.

I have to tell you that I’m getting a cat later this week from Animals in Distress. Her names Polly and she’s 11 years old and a recovering foodaholic ( she’s overweight). But on a strict diet the centre day she’s be ok by Christmas. She very affectionate and purrs a lot. Here’s hoping we’ll be good for each other.

Must get up ( must I , who said!?) as I need to be somewhere at 10.00.
Bless you all, Peter
 

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jennifer1967

Registered User
Mar 15, 2020
4,583
0
Southampton
Thank you everyone for keeping in touch. It’s a great comfort to know there good friends that think of me.

I’ve believe that whatever I’m feeling is ok because otherwise i end up judging myself based on other peoples expectations of how I should be.

This morning , for instance, I’m still in bed ( 08.00) and thoughts run around my brain about everything. I drift in and out of sleep, have little dreams where Bridget is talking normally to me and is normal and then I woke up and realised she not here and I’m alone. It just goes on and on. And I judge myself for not getting up and getting on. When you find yourself on your own there’s no one to encourage you or even tell you what to do ( I need telling sometimes!)

Because Bridget doesn’t know me it’s so so difficult to continue to hold on to the loving connection as it’s all one way. Love needs nurturing both ways but all I get are blank stares. I suppose every day the relationship dies a little more and that’s difficult to accept.

I have to tell you that I’m getting a cat later this week from Animals in Distress. Her names Polly and she’s 11 years old and a recovering foodaholic ( she’s overweight). But on a strict diet the centre day she’s be ok by Christmas. She very affectionate and purrs a lot. Here’s hoping we’ll be good for each other.

Must get up ( must I , who said!?) as I need to be somewhere at 10.00.
Bless you all, Peter
at least you will have to get up and feed polly and her needs. she looks a lot like my cat fred. all he wants is smoothes and attention
 

None the Wiser

Registered User
Feb 3, 2020
222
0
Good Morning @Dutchman. Good move to get a cat I think as they are affectionate, but also self sufficient for most of the time. We have 3 cats and they make the house feel a bit more lived in now that it’s just me rattling around here for most of the time. I hope you enjoy having her around.
 

blackmortimer

Registered User
Jan 2, 2021
127
0
Very glad to hear about the cat @Dutchman. Another living creature to care about is, I find, a great help to those of us coping with the sadness of separation. I've always been a dog person but I've lived with cats and found that they can be every bit as affectionate whilst being less demanding. So, good for you. Keep us posted!

God bless
 

Old Flopsy

Registered User
Sep 12, 2019
218
0
Hi @Dutchman. Wow I am so pleased to hear of Polly- and somewhat envious. She will have had a life before you so may hide at first- mine hid under the bed for two weeks till she plucked up courage to join us in the lounge!

Sadly I had to let her go in January- cancer- but I do miss having another living creature around. Every day I look at the cats available at rescue centres- one day I will decide.
 

Peace lily

Registered User
Jan 30, 2020
84
0
Hi everyone, I think that having a pet is a really good way to help alleviate the feeling of helplessness and sense of loss. It gives something positive to focus on. A sense of purpose. We've just bought a surprise puppy for my mum. She is gorgeous, a Yorkshire terrier/bishon frise. I couldn't bare to watch my mum any longer. She is lost and is grieving since my dad went into a nursing home 3 months ago. I hope that her little puppy will bring some light into her life. I hope that Polly brings you the he companionship you long for @Dutchman
 

Dutchman

Registered User
May 26, 2017
1,219
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73
Devon, Totnes
I’m picking up Polly tomorrow. Let’s hope we can help each other.

When I look back at my early posts, when Bridget was still here, it shows that although I wanted it all to go away and give me peace, I never thought it would end up with Bridget leaving me for good. Now she’s well established in the home but at the start she would try to persuade me to take her out and away. The guilt of leaving her there was overwhelming.
To those who have just started this dementia journey I would say try and get as much comfort as you can from knowing that care staff are looking after your love one 24/7. This you cannot do on your own. Emergency problems are dealt with sooner and there’s always someone to see the small details that we miss, being emotionally drained. ( Got a phone call yesterday “ Peter, hairdresser is here, fringe or no fringe? Quick answer please because Bridget’s getting anxious”) . Try doing that when you’ve just spent a sleepless night and cleaned up the mess in the bathroom!

I couldn’t go home after my shift, no holidays, little sleep and then, after all the care i could give, she still ended up at the home.

Thinking of you all, Peter
 

kindred

Registered User
Apr 8, 2018
2,672
0
I’m picking up Polly tomorrow. Let’s hope we can help each other.

When I look back at my early posts, when Bridget was still here, it shows that although I wanted it all to go away and give me peace, I never thought it would end up with Bridget leaving me for good. Now she’s well established in the home but at the start she would try to persuade me to take her out and away. The guilt of leaving her there was overwhelming.
To those who have just started this dementia journey I would say try and get as much comfort as you can from knowing that care staff are looking after your love one 24/7. This you cannot do on your own. Emergency problems are dealt with sooner and there’s always someone to see the small details that we miss, being emotionally drained. ( Got a phone call yesterday “ Peter, hairdresser is here, fringe or no fringe? Quick answer please because Bridget’s getting anxious”) . Try doing that when you’ve just spent a sleepless night and cleaned up the mess in the bathroom!

I couldn’t go home after my shift, no holidays, little sleep and then, after all the care i could give, she still ended up at the home.

Thinking of you all, Peter
Peter, these words are very wise. Happened to me, too. I sacrificed my life to keep Keith at home, went through hell, like you and he ended up at the home. A district nurse who visited said to me that she wished folk could see this as a natural and healthy progression when the threat to the sanity of the carer becomes too much. I hold on to that. Thank you very much. Kindredx
 

Stacey sue

Registered User
Jan 24, 2020
103
0
Thankyou for your wise words! I am always in that guilty mindset thinking I should have MH home! Who would I be doing that for? Not him because he is unaware and well looked after.
 

Peace lily

Registered User
Jan 30, 2020
84
0
I can relate to you all @Dutchman, @Stacey sue, @kindred. It somehow feels like a failure when someone you loves goes into a care home, when in fact it probably the bravest and kindest act of love to do. Despite the heartbreak and sense of loss I feel seeing my dad in a nursing home, he looks clean, content and well cared for. I don't see the anxiety I saw when he was at home, nor the frustration and short tempered responses from my mum. We visited my dad together on Tuesday, they held hands and were affectionate towards each other, which I hadn't seen for years. She told me afterwards, that she had got to the point were 'it was him or me,' a shocking revelation to hear, but one that maybe many carers reach? Thinking of you all on our shared journey x
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,522
0
High Peak
Good luck with Polly! If you can keep her in one room till she settles in that would help. Don't expect purrs and sitting on your knee at first! Go over to her, offer her your hand to sniff and say a few encouraging words, then back off and leave her to think about it. Repeat often. If she's ok with that, try a little one-finger stroke on her cheeks. Take it slow and let her come to you :)
 

Dutchman

Registered User
May 26, 2017
1,219
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73
Devon, Totnes
Hello @Jaded'n'faded . Seems you’ve had cats before!
We had two cats for 20 years until the last died two weeks after Bridget went into the home. Almost held on for me. He’s the one pictured in my Avatar.

Thanks for the advice which I’ll do as it’s tempting to want a lap cat straight away.
Peterx
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,522
0
High Peak
I have 4 - all Asians and they are siblings though from different litters. The black Smoke is Nico Noodles - she's the oldest. Next is the caramel Burmilla - he's Roly Poly Tickle Tum. Then there's Beau Braveheart - he's a black Ticked Tabby and his sister is Minky Mooncat - a blue Burmilla. All different colours but they have the same parents.
20200322_172328.jpg
 

jennifer1967

Registered User
Mar 15, 2020
4,583
0
Southampton
I have 4 - all Asians and they are siblings though from different litters. The black Smoke is Nico Noodles - she's the oldest. Next is the caramel Burmilla - he's Roly Poly Tickle Tum. Then there's Beau Braveheart - he's a black Ticked Tabby and his sister is Minky Mooncat - a blue Burmilla. All different colours but they have the same parents.
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they are lovely and the fancy names. mine is a tabby called fred who could take smoothes and cuddles all day
 

Dutchman

Registered User
May 26, 2017
1,219
0
73
Devon, Totnes
You know what, in all the excitement of getting my cat I got the name wrong. She known as Poppy not Polly. Not sure if she’ll know the difference. Anyway she’s behind the sofa at the moment and has found a quiet corner.

Went to the home today and Bridget more or less blanked me. I’m finding that this rejection is taking its toll, and I know she can’t help it , and I do understand, but how much can we take before it seems especially hurtful. I find as well that it’s the loss of expression in her eyes that is so dramatic, they are vacant, empty. I’m trying to put into words how I feel and all I can say is that I feel numb.
My counsellor this morning felt I was in a much better place than when we first met 18 months ago. Yes it’s not so raw, I’m off my medication and I have some distance from it all. But the flip side is that I’m losing my only love before my eyes and the distance grows daily.
Anyway , that’s me today
Goodnight everyone. Peterx
 

Old Flopsy

Registered User
Sep 12, 2019
218
0
Hi ~ @Dutchman - nice to see that Poppy has arrived- at least she is in the same room- mine hid in the spare bedroom at first! Just give her time- she will learn to trust you and venture out of her hidey hole in time.

Yes I know what you mean about the vacant look in OH's eyes- I experienced this yesterday when visiting OH. It is soul destroying but that's dementia- truly awful.

Goodnight Peter x