my husband has vascular dementia caused by a mini stroke we think. i am in no way selfish but hes still developed it. he smoked as well and that can contribute to it as well. i never question why or how but just this is what i have to deal with. i dont question anything other wise i would drive myself mad and i cant afford to do that if im looking after my husband
Dementia’s journey
- Thread starter Dutchman
- Start date
Peter, you are again overwhelmed with guilt for something that is not of your making and certainly is none of your fault. When you put life into perspective, any disease, life threatening illness, life altering circumstance be it accidents, Alzheimer’s, dementia, strokes, heart attacks, Parkinson’s, Motor Neurone etc, along with mental health problems, anxiety etc,. are certainly not ‘inflicted’ or brought on to one individual from another. How do you think you, as one individual, loving husband for many years could ‘make’ or want this to happen to Bridget. How could anyone ‘make’ illness, disease etc,. happen to another person Peter, absolutely no one on this earth holds that kind of power. Millions and millions of people throughout history and throughout the world live each day the best they can with whatever life is given to them. We pray to the Lord for life, for perfection, for nothing ‘bad’ to happen, no illness, war, famine, starvation, poverty but whatever happens this is the life the Lord has given us and we have to live our life the best we can under whichever circumstance occurs. Life is tough Peter, our world is tough and has been since the beginning of time every individual can only hope and pray to do their best , their utmost for their loved ones, family, people they know, people they meet, are yet to meet , whom they will never meet. You are but one , achingly trapped in your own hell at present but nothing and no one will be trapped this way for evermore. It will pass, it will change - your life will be altered forever but you will eventually get through this. This is your present, as was yesterday and maybe for many tomorrow’s but certainly not forever Peter. Live a life Peter, your life as best you can at present. You do have a future, just changed from how you thought.
My prayers xx
My prayers xx
Isn't that a paradox though Dutch man, feeling guilty for being selfish? I don't think selfish people feel guilty, and certainly not for long. Selfish people put themselves first, they can cure their guilt rapidly with a few little twists of the truth. You're not a selfish man, you are a grieving man. Is it a ridiculous idea to suggest you move into the care home with Bridget? Not forever, maybe for a month or a few weeks, to help give you some balance or perspective? Just a thought. Best wishes.
She is still there, Peter.
Never consider you otherwise. This disease will make her like this, but will never take her love for you.
Deep down she is missing you.
Ah, but there’s the rub John. I don’t want her missing me. I wouldn’t want her feeling the same way as i do. I want her feeling safe and looked after and as as unworried as she can be.
I think even though she is very much still here, and you can see her, and ensure she is receiving the right care etc......Bridget is in the throes of dementia and I honestly don’t think she now has the capacity to miss you......I really do mean that.
You on the other hand have the conscious struggle over the effects of the disease and what it’s taken from you, you feel guilt at the loss of the life you should be sharing together, the disease stopped that not your inability to cope...a life that’s been robbed from you, and I agree you have both been robbed, and that is so very sad.
But there is nothing you or any of us can do about that, we can only control how we deal with what life throws at us, we can’t stop it happening....acceptance has to come so that you can learn to live differently, learn how to be in your new life.
You will get there in time, your a strong person, take each day as it comes, but I do think you need to be proud of how you did your best in caring for your wife, as tough as it was at times you did it, and I am sure your Bridget would have done exactly the same for you too.
I am sure she too would have struggled if the roles were reversed, but she would have done her best for you too,, just as you did and continue to do for her.
Take care x
You on the other hand have the conscious struggle over the effects of the disease and what it’s taken from you, you feel guilt at the loss of the life you should be sharing together, the disease stopped that not your inability to cope...a life that’s been robbed from you, and I agree you have both been robbed, and that is so very sad.
But there is nothing you or any of us can do about that, we can only control how we deal with what life throws at us, we can’t stop it happening....acceptance has to come so that you can learn to live differently, learn how to be in your new life.
You will get there in time, your a strong person, take each day as it comes, but I do think you need to be proud of how you did your best in caring for your wife, as tough as it was at times you did it, and I am sure your Bridget would have done exactly the same for you too.
I am sure she too would have struggled if the roles were reversed, but she would have done her best for you too,, just as you did and continue to do for her.
Take care x
First of all the encouraging news. it looks like my Counselling 4 Carers which finished back in March due to Covid is going to restart and they’ve asked me if i’d like to resume sessions, with the same counsellor. Yes please i’ve said. Just how it’ll work i don’t know.
I’ve been upset today ( no difference there!) as i had, what i thought, was a good idea but, it turned out to be a sad disappointment for me. I took a portable CD player and headphones to the home so that Bridget could listen to her favourite music. Got really quite excited about her enjoying the experience. The joyful look on her face as she listens , the recognition of the music that we used to listen to together in the car. But no, no recognition, just the annoyance of the headphones and got up and didn’t want to know.
I went back to the car and i see her just looking out of the window at me and i imagine there’s sadness in her face that i’m leaving. It’s such a brutal feeling. Every damn time i go there’s something else to upset me. But i try don’t I, I can’t not make the effort. I’m hanging onto any crumb of what we used to have, that’s why i thought the music a good idea.
Another day
Bless you all, Peter
I’ve been upset today ( no difference there!) as i had, what i thought, was a good idea but, it turned out to be a sad disappointment for me. I took a portable CD player and headphones to the home so that Bridget could listen to her favourite music. Got really quite excited about her enjoying the experience. The joyful look on her face as she listens , the recognition of the music that we used to listen to together in the car. But no, no recognition, just the annoyance of the headphones and got up and didn’t want to know.
I went back to the car and i see her just looking out of the window at me and i imagine there’s sadness in her face that i’m leaving. It’s such a brutal feeling. Every damn time i go there’s something else to upset me. But i try don’t I, I can’t not make the effort. I’m hanging onto any crumb of what we used to have, that’s why i thought the music a good idea.
Another day
Bless you all, Peter
Peter, dementia gives us plenty of sticks to beat ourselves with, you don't need to bring your own to the party. As far as I am aware, the causes of most dementias are not understood, but I am absolutely certain that being a devoted, loving husband will not be one of them. Put that idea back in the box, and slam the lid firmly.
Much of what our
Much of what our
Peter, dementia gives us plenty of sticks to beat ourselves with, you don't need to bring your own to the party. As far as I am aware, the causes of most dementias are not understood, but I am absolutely certain that being a devoted, loving husband will not be one of them. Put that idea back in the box, and slam the lid firmly.
Much of what our PWD is thinking or feeling as simply unknowable - you could live 100years, or die tomorrow, and you will never know what Bridget really feels. You can torture (another stick) yourself constantly looking for glimmers that she misses you, or is unhappy, or you can take your visits at face value. Bridget is smiling, and therefore content. Therefore you can be content.
Easier said than done, I know.
Much of what our PWD is thinking or feeling as simply unknowable - you could live 100years, or die tomorrow, and you will never know what Bridget really feels. You can torture (another stick) yourself constantly looking for glimmers that she misses you, or is unhappy, or you can take your visits at face value. Bridget is smiling, and therefore content. Therefore you can be content.
Easier said than done, I know.
Oh dear Peter, breaking your heart again bless you. Music and headphones-well yes good idea. Think about it Peter, logically. Look at what happened today through Bridget’s eyes. Along comes a person, probably a carer as you still cannot go into the home I presume, puts something on Bridget’s head and turns on a sound. Frightening and quite scary something she has either never done or she has never done for some considerable time. Even if it was you that put the headphones on her and played the music, it is no longer familiar to her and slowly slowly perhaps work up to it. Initially perhaps put the music on a few times, then you put the headphones on and ‘jig about a bit’ at the music, have a headphone each. Great idea, but a much slower introduction may be easier for you both. Also, not forgetting that as much as our loved one may be frightened of any slight change/alteration/unfamiliar situation we too are frightened and sad when things we thought may help don’t, at least not straight away. We have to try and keep trying different things slowly, with patience-similar to teaching a small child. My heart goes out to you Peter, what a truly lovely person you are. I keep you always in my prayers, keep on going Peter - tomorrow is another day xx
Prayers for you and all xx
Prayers for you and all xx
i’m a mess tonight for no real reason. Nothing specific has happened to upset me but it’s just come over me like a wave. I’ve tried to get through to Samaritans but no luck. i’m just unable to handle this tonight that’s why i’m writing it down to get myself settled so reply if you want but it’s me writing it down as i find it helps. I mean, how much longer do i have to on like this? I don’t consider myself strong enough for all this, after all it’s been 15 months now and i’m still like this.
Im crying big time and finding the loneliness far too much. The pictures of Bridget on the shelves remind me of what we had. And no one in my family really understands what i’m going through, not really, and the only one who would really be upset if i wasn’t here is my daughter and she has a husband and grown up children for support. My birthday is next week but there’ll be no special card on the mantelpiece from Bridget telling me she loves me.
I get so overwhelmed by it all. I live in this lovely house full of nice things but it needs sharing and most of what i see are Bridget’s ideas, she was the nest builder. I feel like a stranger. And i don’t see how i can alter anything and i many ways i don’t want to. I need to feel bad to remain connected. And If i feel better sometimes it feels wrong, almost a betrayal. I phone the home everyday to ask the staff how she is and it’s always “she’s ok“. I need to be near her somehow and my calls contain a degree of hope. I wonder if they think that i’m being unrealistic when listening to me when they know first hand that Bridget will deteriorate.
I know all this is commonplace among us grievers but im often told that everyones grief is unique and i feel that. But, of course, i know that you have identical thoughts and you too have moments like i’m having now. I offer my thoughts of fellow feeling and tenderness to you.
Peter
Im crying big time and finding the loneliness far too much. The pictures of Bridget on the shelves remind me of what we had. And no one in my family really understands what i’m going through, not really, and the only one who would really be upset if i wasn’t here is my daughter and she has a husband and grown up children for support. My birthday is next week but there’ll be no special card on the mantelpiece from Bridget telling me she loves me.
I get so overwhelmed by it all. I live in this lovely house full of nice things but it needs sharing and most of what i see are Bridget’s ideas, she was the nest builder. I feel like a stranger. And i don’t see how i can alter anything and i many ways i don’t want to. I need to feel bad to remain connected. And If i feel better sometimes it feels wrong, almost a betrayal. I phone the home everyday to ask the staff how she is and it’s always “she’s ok“. I need to be near her somehow and my calls contain a degree of hope. I wonder if they think that i’m being unrealistic when listening to me when they know first hand that Bridget will deteriorate.
I know all this is commonplace among us grievers but im often told that everyones grief is unique and i feel that. But, of course, i know that you have identical thoughts and you too have moments like i’m having now. I offer my thoughts of fellow feeling and tenderness to you.
Peter
You are stronger that you may think, Peter.
Cry, crying is good, man.
It hurst, but someday it will be better. Stay strong!
Cry, crying is good, man.
It hurst, but someday it will be better. Stay strong!
Thank you Peter. This is a terrible endurance for you, I know. All my thoughts, I know the loneliness hurts so much. I’m just so glad you keep writing on here. With love, Geraldine
It’s pure hell Peter as everyone on this forum knows. You will have times when you feel desperate and times not so. No one person on earth can tell you when, but it will ease, eventually. The good days will become more and the bad will lessen. However, you do need to get some focus for your life. Bridget is no longer the mainstay, the nest builder the person at your side but you still have a life and a great deal to give for the future. Bridget is content in her world which is her normal now. You, now have to find your new normal. Needing to focus on something other than your situation must become your priority. You need to start making a plan about what you want to do, achieve, find, explore and continue with your life and your future. I trust the Lord will ease your sorrow and help you to find your future. Open your heart Peter you have a tomorrow, some would give everything for one. Prayers for you and everyone xx
I can relate to all these feelings ,being sad and lonely, I am just hanging on to the time when I can visit and hug whats left off my lovely husband. I feel I need to spend time with him while I can. I hope this helps how I feel , And we have proper visits soon. Best wishes to all SSue
Lirene, thanks for the continuing support. I wish I had the strength of your faith. It must gives you comfort. I belong ( helping out really since last September when they got me off the pavement after I fell over outside their door) to our local church and they all message me to find out how I am. It’s great being part of that community but I’m not fully committed (yet).
Anyway, you and others on the Forum are my go to for help and you’ve been a life saver, yes really.
Bless you
Hi there Stacey
Went to the home today but I could see through the window that Bridget was asleep so I told the staff not to wake her. It’s hit and miss if if she fully awake and responds to me. But it’s only 15 mins away so no bother.
I keep meaning to go out for a bike ride because I’m a bit worried about my lack of exercise and becoming a couch potato but I just don’t have the motivation. Much easier to stay longer in bed in the morning.
I’m fighting a losing battle trying to encourage Bridget’s son and brother to visit here but I get all sorts of excuses. . I just don’t think they are bothered now that Bridget’s is safely tucked away. I’m tired of trying.
Families ? Best wishes.....film and off to bed
I know how you feel, some people are like that. Don't try to understand them.
The coach potato thing is something I feel it on myself also, with the lockdown is quite difficult as I avoid going out at all.
I re-watched Sister Act 2 last night. I cried a bit, but gave me a strange comfort
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