How few people understand - thanks goodness for TP!

[Frank68]

Just wanted to express gratitude for this community of folks in he same position as ourselves: a partner with AD.
My lovely wife has been in Care Home for two months now as I could no longer cope with increasing incontinence, broken nights and all the chaos. Despite finding a Care Home nearby with fantastic caring and skilled staff, it has been the saddest and most anxious time of my life.
a. The "Guilt Monster" is well in residence on my shoulder - could I really not have managed things at home better / a bit longer / some of the folks on TP have done much better than me....
b. I am daily in tears on many occasions - especially when I leave her after a visit or an outing, and every morning when I awake to the empty house, or return home after being out.
c. I just miss her so dreadfully. We fell in love the day we met - my 17th birthday over 50 years ago. I often feel like grabbing her from the CH and brining her home - but then head kicks in and I know that might just be extremely upsetting and confusing for her... I might not cope again... then where would we be? (Has anyone done that btw??)
d. She is always so pleased to see me when I visit - most days. I get beams and kisses and waves as soon as she spots me. We usually go out - Church, coffee, short walk, even lunch occasionally with a friend. I take her back - she goes into the CH happily but looks lost and confused when I say goodbye...
e. Is she happy?? Here is the conundrum - because she lost her language some years ago she just cannot tell me. A coupe of days ago she actually strung some words together - more than for a very long time. She looked as if she was really trying to tell me something but I just could not understand what she was trying to say. She has formed good relationships with the staff in the small and intimate CH and that seems a good pointer.

Nothing new here I know - but here is one of the few places outside my close family where I feel folks do understand this particular grief / loss / bereavement. Even good friends have said / written about "getting some of your life back" - "you have done a good job" (as if it's over!) - "you can be a little less obsessive about it all now".

TP Friends and Warriors - I salute you and will say a prayer of thanks for you as off to collect Sue for Church shortly and I''ll be late if I don't stop this now.

Frank

 

[marionq]

I have no easy solutions to the pain you feel but the one thing that strikes me is how sad she feels when you say goodbye. Could you just slip away while she is occupied with other company or having her lunch etc.

With no short term memory she will not know how long you have been there or indeed how long it is until you come back. That jarring moment when you walk away won't happen if she doesn't see you go.

Good wishes.

 

[Grannie G]

Hello Frank

So many of us are with you on this and identify 100% with your feelings.

The guilt monster should be killed off now and forever, especially as you say immediately afterward how you could not have managed any longer.

Pleas don`t compare yourself with others. Everyone has their own breaking point. It is not a competition.

It`s obvious you have done your best and it`s so easy once you are rested and most of the physical caring responsibilities are off your hands to think you could have done better.

It`s a bit like remembering our schooldays. Do we ever remember wet playtimes? For me, it was sunshine every day. Totally unrealistic but that`s how it seemed.

Of course it`s the saddest time and the most agonising decision but it`s not your fault.

 

[LadyA]

Frank, I couldn't take my husband out of his nursing home as I couldn't manage him, but I visited at least every other day. Like your wife, he would light up when he saw me coming, and hated me leaving. So, I made a point of never wearing outdoor clothes in to the nursing home. I left my coat & bag in the car, and just wandered in in my jeans & top. When it came time to leave, I'd say something like "I better go do the laundry. I'll see you later." My husband thought I lived in the nursing home too, and when I wasn't with him, I was just busy working elsewhere in the building!

 

[Grannie G]

I did the same Frank. I don`t drive so left all my clothes and bags in my husband`s room, which luckily was on the ground floor by the front door. He only saw me in indoor clothes.

His face also lightened up when he saw me. Strangely he always knew me when he was in residential care even though he hadn`t know me at times in our own home. I never pressed him to identify me. The smile and greeting were enough.

I never went at mealtimes because he wanted me to eat with him. He said he was uncomfortable eating while I watched and had nothing. That was when he had enough language to express himself.

When it was time to go, I either went shopping, went to get the washing in or made any other acceptable excuse. I sometimes crept back to look at him after I`d gone and he was sitting quite peacefully showing no signs of distress.

 

[Casbow]

Hello Frank. My husband has been in care home for almost 4 months. My heart is so sad when I sit on my own in the evening and I keep thinking if only I had tried a bit longer. I often try to think of what I could do to get him home and be able to manage. But last week there was a fete in a part of the home that meant going out of his area where he is now settled. We had trouble getting him to go through the door. When he saw all the other people he shouted at them to shut up. Then he kept squeezing my hand so hard it hurt. This was when I realised that he still didn't want to socialise. He would not go out when he was still at home and I was very isolated for a long while. That and double incontinence were what finally made me realise i couldn't manage alone any longer. So please don't feel that you have failed. I think we all feel like failures when we first have to make the decision for them to go into care. And that guilt hangs around. It is still with me. But I visit every other day and can see that I couldn't have coped any longer. Sending a hug for you.xx

 

[Agzy]

Just wanted to express gratitude for this community of folks in he same position as ourselves: a partner with AD.
My lovely wife has been in Care Home for two months now as I could no longer cope with increasing incontinence, broken nights and all the chaos. Despite finding a Care Home nearby with fantastic caring and skilled staff, it has been the saddest and most anxious time of my life.
a. The "Guilt Monster" is well in residence on my shoulder - could I really not have managed things at home better / a bit longer / some of the folks on TP have done much better than me....
b. I am daily in tears on many occasions - especially when I leave her after a visit or an outing, and every morning when I awake to the empty house, or return home after being out.
c. I just miss her so dreadfully. We fell in love the day we met - my 17th birthday over 50 years ago. I often feel like grabbing her from the CH and brining her home - but then head kicks in and I know that might just be extremely upsetting and confusing for her... I might not cope again... then where would we be? (Has anyone done that btw??)
d. She is always so pleased to see me when I visit - most days. I get beams and kisses and waves as soon as she spots me. We usually go out - Church, coffee, short walk, even lunch occasionally with a friend. I take her back - she goes into the CH happily but looks lost and confused when I say goodbye...
e. Is she happy?? Here is the conundrum - because she lost her language some years ago she just cannot tell me. A coupe of days ago she actually strung some words together - more than for a very long time. She looked as if she was really trying to tell me something but I just could not understand what she was trying to say. She has formed good relationships with the staff in the small and intimate CH and that seems a good pointer.

Nothing new here I know - but here is one of the few places outside my close family where I feel folks do understand this particular grief / loss / bereavement. Even good friends have said / written about "getting some of your life back" - "you have done a good job" (as if it's over!) - "you can be a little less obsessive about it all now".

TP Friends and Warriors - I salute you and will say a prayer of thanks for you as off to collect Sue for Church shortly and I''ll be late if I don't stop this now.

Frank

To me this is such an uplifting and loving post with wich I empathise totally. The right decisions taken at the right time and best all round, good decision

 

[Unhappy15]

Wishing you well

Just wanted to express gratitude for this community of folks in he same position as ourselves: a partner with AD.
My lovely wife has been in Care Home for two months now as I could no longer cope with increasing incontinence, broken nights and all the chaos. Despite finding a Care Home nearby with fantastic caring and skilled staff, it has been the saddest and most anxious time of my life.
a. The "Guilt Monster" is well in residence on my shoulder - could I really not have managed things at home better / a bit longer / some of the folks on TP have done much better than me....
b. I am daily in tears on many occasions - especially when I leave her after a visit or an outing, and every morning when I awake to the empty house, or return home after being out.
c. I just miss her so dreadfully. We fell in love the day we met - my 17th birthday over 50 years ago. I often feel like grabbing her from the CH and brining her home - but then head kicks in and I know that might just be extremely upsetting and confusing for her... I might not cope again... then where would we be? (Has anyone done that btw??)
d. She is always so pleased to see me when I visit - most days. I get beams and kisses and waves as soon as she spots me. We usually go out - Church, coffee, short walk, even lunch occasionally with a friend. I take her back - she goes into the CH happily but looks lost and confused when I say goodbye...
e. Is she happy?? Here is the conundrum - because she lost her language some years ago she just cannot tell me. A coupe of days ago she actually strung some words together - more than for a very long time. She looked as if she was really trying to tell me something but I just could not understand what she was trying to say. She has formed good relationships with the staff in the small and intimate CH and that seems a good pointer.

Nothing new here I know - but here is one of the few places outside my close family where I feel folks do understand this particular grief / loss / bereavement. Even good friends have said / written about "getting some of your life back" - "you have done a good job" (as if it's over!) - "you can be a little less obsessive about it all now".

TP Friends and Warriors - I salute you and will say a prayer of thanks for you as off to collect Sue for Church shortly and I''ll be late if I don't stop this now.
S
Frank

Hello Frank
I feel that most people do not understand the life you have trying to look after your partner who is suffering from dementia and like you I am grateful to everyone on TP.

On TP everyone understands they are living it daily as opposed to people who have never experienced this illness. Who hasn't said or done things they regret, but this is out of fear, tiredness and frustration, our lives spiral out of control thanks to this illness.

Like the other replies, I never say goodbye to my husband, I try to sit him down and get him to look at something while I leave and I never look back, it's just too painful.

I,like you, want to bring him back but you just have to face the reality and ask yourself can I go through all that again? For me the answer is no. As much as I cry and miss him I know I could not manage at home.

Frank, we do our best and most of the time we feel our best is not good enough, but what more can we do? Perhaps we should be kinder to ourselves and try to put the guilt monster to bed.

 

[Sammie234]

Just wanted to express gratitude for this community of folks in he same position as ourselves: a partner with AD.
My lovely wife has been in Care Home for two months now as I could no longer cope with increasing incontinence, broken nights and all the chaos. Despite finding a Care Home nearby with fantastic caring and skilled staff, it has been the saddest and most anxious time of my life.
a. The "Guilt Monster" is well in residence on my shoulder - could I really not have managed things at home better / a bit longer / some of the folks on TP have done much better than me....
b. I am daily in tears on many occasions - especially when I leave her after a visit or an outing, and every morning when I awake to the empty house, or return home after being out.
c. I just miss her so dreadfully. We fell in love the day we met - my 17th birthday over 50 years ago. I often feel like grabbing her from the CH and brining her home - but then head kicks in and I know that might just be extremely upsetting and confusing for her... I might not cope again... then where would we be? (Has anyone done that btw??)
d. She is always so pleased to see me when I visit - most days. I get beams and kisses and waves as soon as she spots me. We usually go out - Church, coffee, short walk, even lunch occasionally with a friend. I take her back - she goes into the CH happily but looks lost and confused when I say goodbye...
e. Is she happy?? Here is the conundrum - because she lost her language some years ago she just cannot tell me. A coupe of days ago she actually strung some words together - more than for a very long time. She looked as if she was really trying to tell me something but I just could not understand what she was trying to say. She has formed good relationships with the staff in the small and intimate CH and that seems a good pointer.

Nothing new here I know - but here is one of the few places outside my close family where I feel folks do understand this particular grief / loss / bereavement. Even good friends have said / written about "getting some of your life back" - "you have done a good job" (as if it's over!) - "you can be a little less obsessive about it all now".

TP Friends and Warriors - I salute you and will say a prayer of thanks for you as off to collect Sue for Church shortly and I''ll be late if I don't stop this now.

Frank

Hello Frank

I know it can't have been an easy decision for you to make, your post had me crying I'm not so far along the road as you are, though I do hope it's not a decision I will have to make. My husband was only diagnosed with Alzheimer'/dementia three years ago, like you we were only 17/18 when met. I could not imagine a life without him in it. His short term memory is so bad yet there are times he says how Useless he is at not remembering anything he has just done. I don't know where this path leads but we're all on it together !

 

[Frank68]

Thank youy!

Wow - what a lovely lot of replies - such understanding and some great advice too!!

I really had not thought about not directly saying goodbye, nor the outdoors clothes ruse - nor the "must just go and sort the laundry"! I had realised "I must be getting home" would be better avoided - but this ideas you have shared are very useful.

You are all probably correct too about out of sight = out of mind, indeed the staff say she always settles down after I have actually gone and they are very good at diversion tactics I think. Thanks too for the 'not looking back' advice - that is one of the things that really gets to me...

Bless you.

Frank