I wrote this to explain to my children how I feel and they suggested I should post it somewhere, so here goes:
How's Penny then OK!
How I hate that question. I know it is asked out of courtesy for Penny, and in anticipation of getting
some vague, non-committal semi-positive reply . . . . very similar in fact to the ones I give. But
really what I want to say is No, as you ask, she is not OK, she is very far from OK". I never get to
say this however because I know my eyes would fill with tears, and my mouth would start contorting to stop me crying and I'd be left feeling like a clown.
No she is not OK, she is very far from OK. She is dying a little bit more every day, although in this
inevitable trend some days are always going to be better than others. I go to see Penny as often as I
can, and with the help of the kids someone usually manages to be there for her every day. For me every visit starts with a deep breath at the front door, if I feel OK I just press the doorbell, if not I take half a tablet so I can give her that welcoming smile I know she needs.
Walking down to the resident's lounge you are never sure of the welcome you'll get.
"Hello Penny my love" as I crouch down in front of her and try to hold her hand. Sometimes it is
very hard not to have tears in your eyes when she pulls her hand away instantly from your touch,
saying your hands are too cold. She looks at you in puzzlement; she understands she knows you but is not sure from where or from when. She is wearing somebody else's clothes, clothes that you've never seen before with food stains on her top and trousers. As you talk she is looking vacantly somewhere over your shoulder. . . . . or
"Hello Penny, my love" this time her eyes light up and for a millisecond you see that flash of light
that you've known and treasured for so many years. " What are you doing here then," she says “I
haven't seen you for a while" as she pouts her lips to take the kiss I am offering. She is wearing
clothes that I remember taking from her wardrobe and putting her name on, those months ago,
a1though she sti1l has food stains on her top and trousers....or
"Hello Penny my love" touching her hand as she dozes in the chair. She wakes and a broad smile
crosses her face. She probably doesn't know I'm her husband but she seems so happy I'm there,
which in turn makes me so happy I could hug her. "Do you want to go to the dining room and sing a
few songs" she answers yes, it's always yes. In fact Penny has always answered yes to any question
that begins with “Do you want to . . ." which has made living with her so easy.
Alzheimer's however isn't Penny's only problem, as it is now pitiful to watch her struggling from
the chair to her walking aid, now her hip arthritis has become so bad. Some years ago when an X-
ray showed her arthritis had started, and at a time when I had a lot more respect for the GP service
than I do today, I asked about having a new hip and was told because of her Alzheimer's this was not an option. I was a motor dealer and he was a GP so I took his response as fact and we went on with our lives. A few years later when the arthritis was ruining her life I asked again what could be done. This time another GP says there was no medical reason why an Alzheimer's sufferer couldn't have had a new hip, but because her Alzheimer's is now so bad she probably couldn't cope with the
recuperative regime.
This time I needed conformation that it was too late. We got as far as the pre-operative assessment
at a private hospital at Newport, when during the questions Penny completely broke down in a
flood of tears saying “leave me alone I don't want anything done to me”, followed moments later by me in a flood of tears. When the Kleenexes were finally put away all present agreed the operation was no longer going to be an option. Now as I watch her struggling with even the most basic movements I am left with that haunting feeling that this is partly down to me as with a different attitude years ago I could have changed things so much for the better. You live with this fact because you have to live with it but your heart still sinks each time you watch her struggling. Just another guilt to add to the agonising guilt that it was me who put her in this place to begin with.
We head towards the dining room with Penny taking tiny pigeon steps with her walking aid. She stares down at the space in front of her, moving as slowly as any movement can get, hesitating at every crease or shadow on the floor as if they were traps set to ensnare her. It's a sad sight - there is so little left now of that vivacious spirit that once made Penny shine.
Thankfully the dining room is always quiet at this time and you're left in peace to try and get Penny
from her walking aid into a chair. No mean feat as she holds onto the handles of the aid as if her life
depended on it. Luckily in the dining room you can move the chairs to make sitting easier. And
after a few choruses of "no, no, no,....I can't, I can't, I can't" we are both finally seated with my
ipad on the table in front of us packed with Youtube videos, which gives us a good choice of songs.
Penny has always loved to sing and she sings well.
Whatever mood Penny was in before, after 10 minutes or so she is usually visibly relaxed, singing
along to the songs she knows. She knows lots of songs all the way through, some she only heard a
couple of years ago after the Alzheimer's was already well established, yet she doesn't know my
name - so how does that work! She's visibly proud when I complement her singing or the number
of songs that she knows. Sometimes she will look at you when she sings a certain pertinent line and it will make your heart skip. Sometimes she's complimented by other visitors who have also come in to use the dining room and have listened in, asking will we be back the same time next week? More smiles . .. for an hour or so we can just sit and enjoy each other's company, which normal people can do all the time.
Going back to her seat in the lounge isn't as easy as coming out. It's later, the staff are busy trying to
get patients into pyjamas, and there is an inevitable tension in the air as they try and get this done.
Penny has more difficulty leaving the walking aid and getting back into the chair, as this time you can't move the chair to help, she gets frustrated and sometimes she's on the point of being angry. Sometimes very angry. And if she's not back in the row that she usually sits in then things are twice as bad. Al1 this doesn't happen independently, it's played out to a backdrop of other residents all with their own troubles, but who won't move an inch to help and there are feet everywhere
Sometimes you feel you that you are getting nowhere but in the end she's there in her chair. Leaving her though is another story, she will never smile, sometimes she will just look ahead as you kiss her forehead and say you will see her tomorrow. At other times she will really not understand why she's being left there and you are going away and will put her face in her hands and cry uncontrollably. It breaks your heart but there is nothing you can do in a crowded room but give her a kiss and walk away. The TV is on but people are looking not watching. I walk to the exit avoiding
pyjama-clad patients wandering about aimlessly on their zimmer frames, someone is shouting for the toilet and getting louder and louder, somebody else is shouting because they can, two more are arguing over a chair in the smaller lounge where most of the other patients are semi-comatose, and I'm leaving Penny behind to endure all this while I go home. To have and to hold in sickness and in health until death do us part.
There is no saying how I'll feel getting back to the car either, if things have gone well I'll just let out a sigh of relief and turn on the music, if not I'll have to take the other half of my tablet to calm down. Occasionally I will be crying into my hands saying I can't do this any more, and no amount of tablets will help that and I'll stop on the way home in a pub for a drink.
But tomorrow I'11be back and we'll start this all over again.
Hows Penny then OK?
Yes she's fine.
How's Penny then OK!
How I hate that question. I know it is asked out of courtesy for Penny, and in anticipation of getting
some vague, non-committal semi-positive reply . . . . very similar in fact to the ones I give. But
really what I want to say is No, as you ask, she is not OK, she is very far from OK". I never get to
say this however because I know my eyes would fill with tears, and my mouth would start contorting to stop me crying and I'd be left feeling like a clown.
No she is not OK, she is very far from OK. She is dying a little bit more every day, although in this
inevitable trend some days are always going to be better than others. I go to see Penny as often as I
can, and with the help of the kids someone usually manages to be there for her every day. For me every visit starts with a deep breath at the front door, if I feel OK I just press the doorbell, if not I take half a tablet so I can give her that welcoming smile I know she needs.
Walking down to the resident's lounge you are never sure of the welcome you'll get.
"Hello Penny my love" as I crouch down in front of her and try to hold her hand. Sometimes it is
very hard not to have tears in your eyes when she pulls her hand away instantly from your touch,
saying your hands are too cold. She looks at you in puzzlement; she understands she knows you but is not sure from where or from when. She is wearing somebody else's clothes, clothes that you've never seen before with food stains on her top and trousers. As you talk she is looking vacantly somewhere over your shoulder. . . . . or
"Hello Penny, my love" this time her eyes light up and for a millisecond you see that flash of light
that you've known and treasured for so many years. " What are you doing here then," she says “I
haven't seen you for a while" as she pouts her lips to take the kiss I am offering. She is wearing
clothes that I remember taking from her wardrobe and putting her name on, those months ago,
a1though she sti1l has food stains on her top and trousers....or
"Hello Penny my love" touching her hand as she dozes in the chair. She wakes and a broad smile
crosses her face. She probably doesn't know I'm her husband but she seems so happy I'm there,
which in turn makes me so happy I could hug her. "Do you want to go to the dining room and sing a
few songs" she answers yes, it's always yes. In fact Penny has always answered yes to any question
that begins with “Do you want to . . ." which has made living with her so easy.
Alzheimer's however isn't Penny's only problem, as it is now pitiful to watch her struggling from
the chair to her walking aid, now her hip arthritis has become so bad. Some years ago when an X-
ray showed her arthritis had started, and at a time when I had a lot more respect for the GP service
than I do today, I asked about having a new hip and was told because of her Alzheimer's this was not an option. I was a motor dealer and he was a GP so I took his response as fact and we went on with our lives. A few years later when the arthritis was ruining her life I asked again what could be done. This time another GP says there was no medical reason why an Alzheimer's sufferer couldn't have had a new hip, but because her Alzheimer's is now so bad she probably couldn't cope with the
recuperative regime.
This time I needed conformation that it was too late. We got as far as the pre-operative assessment
at a private hospital at Newport, when during the questions Penny completely broke down in a
flood of tears saying “leave me alone I don't want anything done to me”, followed moments later by me in a flood of tears. When the Kleenexes were finally put away all present agreed the operation was no longer going to be an option. Now as I watch her struggling with even the most basic movements I am left with that haunting feeling that this is partly down to me as with a different attitude years ago I could have changed things so much for the better. You live with this fact because you have to live with it but your heart still sinks each time you watch her struggling. Just another guilt to add to the agonising guilt that it was me who put her in this place to begin with.
We head towards the dining room with Penny taking tiny pigeon steps with her walking aid. She stares down at the space in front of her, moving as slowly as any movement can get, hesitating at every crease or shadow on the floor as if they were traps set to ensnare her. It's a sad sight - there is so little left now of that vivacious spirit that once made Penny shine.
Thankfully the dining room is always quiet at this time and you're left in peace to try and get Penny
from her walking aid into a chair. No mean feat as she holds onto the handles of the aid as if her life
depended on it. Luckily in the dining room you can move the chairs to make sitting easier. And
after a few choruses of "no, no, no,....I can't, I can't, I can't" we are both finally seated with my
ipad on the table in front of us packed with Youtube videos, which gives us a good choice of songs.
Penny has always loved to sing and she sings well.
Whatever mood Penny was in before, after 10 minutes or so she is usually visibly relaxed, singing
along to the songs she knows. She knows lots of songs all the way through, some she only heard a
couple of years ago after the Alzheimer's was already well established, yet she doesn't know my
name - so how does that work! She's visibly proud when I complement her singing or the number
of songs that she knows. Sometimes she will look at you when she sings a certain pertinent line and it will make your heart skip. Sometimes she's complimented by other visitors who have also come in to use the dining room and have listened in, asking will we be back the same time next week? More smiles . .. for an hour or so we can just sit and enjoy each other's company, which normal people can do all the time.
Going back to her seat in the lounge isn't as easy as coming out. It's later, the staff are busy trying to
get patients into pyjamas, and there is an inevitable tension in the air as they try and get this done.
Penny has more difficulty leaving the walking aid and getting back into the chair, as this time you can't move the chair to help, she gets frustrated and sometimes she's on the point of being angry. Sometimes very angry. And if she's not back in the row that she usually sits in then things are twice as bad. Al1 this doesn't happen independently, it's played out to a backdrop of other residents all with their own troubles, but who won't move an inch to help and there are feet everywhere
Sometimes you feel you that you are getting nowhere but in the end she's there in her chair. Leaving her though is another story, she will never smile, sometimes she will just look ahead as you kiss her forehead and say you will see her tomorrow. At other times she will really not understand why she's being left there and you are going away and will put her face in her hands and cry uncontrollably. It breaks your heart but there is nothing you can do in a crowded room but give her a kiss and walk away. The TV is on but people are looking not watching. I walk to the exit avoiding
pyjama-clad patients wandering about aimlessly on their zimmer frames, someone is shouting for the toilet and getting louder and louder, somebody else is shouting because they can, two more are arguing over a chair in the smaller lounge where most of the other patients are semi-comatose, and I'm leaving Penny behind to endure all this while I go home. To have and to hold in sickness and in health until death do us part.
There is no saying how I'll feel getting back to the car either, if things have gone well I'll just let out a sigh of relief and turn on the music, if not I'll have to take the other half of my tablet to calm down. Occasionally I will be crying into my hands saying I can't do this any more, and no amount of tablets will help that and I'll stop on the way home in a pub for a drink.
But tomorrow I'11be back and we'll start this all over again.
Hows Penny then OK?
Yes she's fine.
