It feels so bleak

[Sad Staffs]

Hi Sad Staffs, OH having a better day today just hope it lasts. About 3 years ago I went to the doctors with palpatations, she said it was because of stress and put me on citilopram 20mg I have recently reduced the dose to 10mg and thank goodness I haven't had any palpitations, when I was young I had a heart murmur so when the palpitations started I was really worried as if something happens to me who will look after OH! Take care Lx

So pleased you are not getting palpitations anymore, scary for you.
I was born with a heart murmur and pulmonary stenosis, so have lived with this forever. They used to monitor me every 6 or 12 months, then decided when I was around 50 it was stable, so come back if you think you are going to conk out!!
I don’t even think about it anymore. But I do worry that something will happen to me and I will need Hospital care. I have had a new hip that is painful, I’ve had Breast cancer and other issues. I’m lucky that they happened pre his dementia, but what if they hadn’t?
its a terrifying thought. And so many of us are in the same boat. Who will come to our rescue....
Take care, and nice to talk to you xx

 

[Starbright]

You have touched on a sensitive issue, to enable your loved one to keep a sense of dignity and self worth, and losing the driving license undermines that enormously. I know my husband feels diminished by the loss of his driving license. Only yesterday we were talking about our old holidays, because his long term memory is still there for things he really enjoyed. He used to do most of the driving around. I said that it would be difficult for us to do that now because I would have to do the driving and he said ‘well I can drive’ completely forgetting that he has no license. He was silent and said nothing. So sad.

My oh did all the driving loved it and would never let me drive, however since losing his licence I have to drive and it took a while for me to get my confidence back. Needs must ,but he still says “Shall I take you somewhere” most mornings. He just forgets it like you say it hit him hard and hates it when he remembers he can’t, it’s at theses times I have to try and distract him, not always easy but I’m learning I think all so sad

 

[Starbright]

So pleased you are not getting palpitations anymore, scary for you.
I was born with a heart murmur and pulmonary stenosis, so have lived with this forever. They used to monitor me every 6 or 12 months, then decided when I was around 50 it was stable, so come back if you think you are going to conk out!!
I don’t even think about it anymore. But I do worry that something will happen to me and I will need Hospital care. I have had a new hip that is painful, I’ve had Breast cancer and other issues. I’m lucky that they happened pre his dementia, but what if they hadn’t?
its a terrifying thought. And so many of us are in the same boat. Who will come to our rescue....
Take care, and nice to talk to you xx

You have had so much to deal with ...take care and be kind to yourself ...(((Hugs)))

 

[Sad Staffs]

You have touched on a sensitive issue, to enable your loved one to keep a sense of dignity and self worth, and losing the driving license undermines that enormously. I know my husband feels diminished by the loss of his driving license. Only yesterday we were talking about our old holidays, because his long term memory is still there for things he really enjoyed. He used to do most of the driving around. I said that it would be difficult for us to do that now because I would have to do the driving and he said ‘well I can drive’ completely forgetting that he has no license. He was silent and said nothing. So sad.

We have had these conversations... he makes no attempt to drive, doesn’t have a licence, but still tells me it will be ok in an emergency. He will drive me to the hospital. If we have a row, he threatens to get his car keys, but at the moment, I hope, they are just that, threats!
I live with a lump of sadness in my throat, always threatening to spill over. I find crying helps, a bit pathetic really!
Thank you, take care x

 

[Grannie G]

We often said in the past a pipe dream would be for all of us to live within

I find crying helps, a bit pathetic really!

Not pathetic at all @Sad Staffs. You need some way of releasing your emotions and crying is better than screaming.

When I cried it upset my husband but I told him I was crying for both of us.

Now he is no longer here , I am free , he is free and I still cry.

 

[karaokePete]

I agree with Grannie G, @Sad Staffs, nothing pathetic about crying.

When I was a child my parents meted out treatment that would see them in court these days. I dealt with it by defiantly eyeballing them without ever showing tears or weakness. As a result I grew up as an unflinching type. Dementia has made me cry, often. I think that when ones OH is the person with dementia the emotion that's enshrined in that love for another just opens the floodgates.

 

[carolynp]

I agree with Grannie G, @Sad Staffs, nothing pathetic about crying.

When I was a child my parents meted out treatment that would see them in court these days. I dealt with it by defiantly eyeballing them without ever showing tears or weakness. As a result I grew up as an unflinching type. Dementia has made me cry, often. I think that when ones OH is the person with dementia the emotion that's enshrined in that love for another just opens the floodgates.

Yes. Beautifully put about the love. Thank you Pete.

 

[Starbright]

I agree with Grannie G, @Sad Staffs, nothing pathetic about crying.

When I was a child my parents meted out treatment that would see them in court these days. I dealt with it by defiantly eyeballing them without ever showing tears or weakness. As a result I grew up as an unflinching type. Dementia has made me cry, often. I think that when ones OH is the person with dementia the emotion that's enshrined in that love for another just opens the floodgates.

That brought a tear , it’s the love isn’t it ,we’ve been together 57 years and he’s my bestest friend ..I have and still am crying a lot but P just doesn’t seem to be able to...he was always an emotional chap before ..I just wonder is lack of empathy part of the disease.
Warmest and hugs. A x

 

[Starbright]

We often said in the past a pipe dream would be for all of us to live within


Not pathetic at all @Sad Staffs. You need some way of releasing your emotions and crying is better than screaming.

When I cried it upset my husband but I told him I was crying for both of us.

Now he is no longer here , I am free , he is free and I still cry.

That is so sad grannie g ...thinking of you ...here’s a hug

 

[karaokePete]

Yes @Starbright, lack of empathy is a part of dementia.

As dementia progresses the loss of brain function can make a person with dementia seem selfish, thoughtless, uncaring etc. It isn't that the person changes, it's just that the areas in the brain responsible for empathy etc., cease to function as they should due to damage.

However, right until the end, when even physical abilities can be lost due to the brain damage, it is known that feelings/emotions remain and a person with dementia can get quite expert at reading body language as it's all that's left them as a means of communication in many instances. That's why it's important to remember that our loved ones are still there under the visible symptoms and engage with them with as happy an attitude as possible. Even when a person with dementia seems aggressive they may just be trying to communicate a need.

It's a hard ask for us carers but it's one that I constantly remind myself about.

 

[Sad Staffs]

I agree with Grannie G, @Sad Staffs, nothing pathetic about crying.

When I was a child my parents meted out treatment that would see them in court these days. I dealt with it by defiantly eyeballing them without ever showing tears or weakness. As a result I grew up as an unflinching type. Dementia has made me cry, often. I think that when ones OH is the person with dementia the emotion that's enshrined in that love for another just opens the floodgates.

You really made me feel for you, it must have been a tough childhood, but it has made you the considerate caring person you are today. Some of your posts are so full of wisdom, thank you. I’m new to dementia. So people like you are doing such a great job supporting people like me, who is floundering in the dark.
So thank you for all that you do for me, and for letting me know that it is ok to cry, to be pathetic, to get angry even though I know I shouldn’t.
I’m on such a steep learning curve. I never know if I’m doing the right thing. I don’t want to be doing what I’m doing. Now I’m waffling.... is it ok to waffle!!
xx

 

[karaokePete]

I thank you too @Sad Staffs. I also help my wife and myself when I write my posts as they clarify things in my own mind, besides just being some ‘me’ time while I’m on TP.

Yes, it’s OK to waffle as that can vent feelings with people who understand. Sometimes that is a rare thing when ones OH has dementia. It’s not their fault when they can’t converse or empathise as they once did so it's a function of TP that we can seek conversation and empathy here, among people who understand, if the dementia has caused these problems for us - it doesn’t always do so, of course.

 

[karaokePete]

BTW, I’m not sure any of us knows if we are doing the right thing from time to time. I am sure all of us can get frustrated/exasperated/angry at times - I know I feel all three of those emotions.

Dementia is an emotional and physical rollercoaster at times. It’s also as slippery as an eel and as changeable as a chameleon so it’s difficult, if not impossible, to get on top of things at times.

However, as I often say, TP is here for you and everyone else, including me.

 

[kindred]

@PalSal
I think your post put me to shame. Yes, my husband gets very aggressive. But it’s mostly verbal unkind swearing abuse. The only physical abuse has been when he pushed me over, went to use his elbow, always physical threatening mostly, but he has never punched me. It’s almost always at night when I’m putting his Incontinence pants on, and I know that inside he despises what is happening. He has always been such a strong proud man. My heart is breaking writing this.
It’s such a lonely existence being a carer, but I love him and I know that there are people who are having a tougher time than I am.
Take care and thank you, because I know if I gave in all the time, then there would be more harmony xx

Yes, darling, but where would that leave you, if you gave in all the time. OH K was difficult at night, pushed me down the stairs. I know, I know, didn't mean to. For a long time I struggled - it was as though someone who had lost their mind was given centre stage and I was expected to be the unquestioning servant. My mind could not take this in. Still finds it hard. Only by telling myself he cannot see the beauty of the trees and the sky any more could I find compassion. It is a lonely existence being a carer. I know. The strength of love is astounding. So good to hear from you. with love, Kindred aka geraldinexx

 

[AliceA]

We have had a good life together and I will always have those memories. We had wonderful holidays, horse riding in the Rockies, cruising Alaska, and many many others.
Now we struggle to go out for coffee or lunch. We are surrounded by family, friends and acquaintances who jet off on the sort of holidays we had. Pop out for lunch, go to see family and friends on a whim. And yes, I know that it is a horrible trait, but I envy them. The freedom to do the things we have done and now I feel robbed.
I’m writing this and I’m ashamed of myself. I need to be a better person. But I’m just not the person I used to be and I’m not the person I want to be.
I know some of you will understand how I feel, some of you might think I should get a grip. But I just feel at a loss, life doesn’t seem worth living anymore. xx

Never, never criticise yourself. You are doing your best in a very difficult situation. We all have different abilities some work for us and some against. We are all on a steep learning curve, dancing on our toes, trying to keep a balance on an ever moving challenge. You sound exhausted and overwhelmed. Please look after yourself.

 

[Sad Staffs]

Yes, darling, but where would that leave you, if you gave in all the time. OH K was difficult at night, pushed me down the stairs. I know, I know, didn't mean to. For a long time I struggled - it was as though someone who had lost their mind was given centre stage and I was expected to be the unquestioning servant. My mind could not take this in. Still finds it hard. Only by telling myself he cannot see the beauty of the trees and the sky any more could I find compassion. It is a lonely existence being a carer. I know. The strength of love is astounding. So good to hear from you. with love, Kindred aka geraldinexx

You are a gem @kindred ... thank you Bxx

 

[Sad Staffs]

Never, never criticise yourself. You are doing your best in a very difficult situation. We all have different abilities some work for us and some against. We are all on a steep learning curve, dancing on our toes, trying to keep a balance on an ever moving challenge. You sound exhausted and overwhelmed. Please look after yourself.

Thank you... I don’t sleep well these days. I would like to blank my mind, but it’s overflowing, never runs out! xx

 

[AliceA]

Sleep is a problem. I am trying to alter my pattern. I try to do peaceful things for an hour before bed. A slow potter. No TV that would play on my mind and intrude into my dreams.
Of course I wake up during the night, sometime because someone disturbs sometimes just because of me.
I am finding a sleep app helps. At the moment I am using the free part of sonic sleep. It is relaxing and has relaxation, I rather like Brahms Lulaby!
They suggest the the eight hour programme. On waking a sound comes on gently increasing. It does not stop me waking up but it just nudges me back to sleep because the waking sound has not been heard. Without it I tend to wake and start thinking or checking emails and stuff I need on the iPad. Sounds odd but it is a bit like a nanny, perhaps. Another is Sleepio, this was invented by a university. It lets you chart the pattern. Most of us sleep more than we think. Sleep is so important it affects our own healing, hormones and so much more. I am having a weight issue, so sleep is important for that. I am sure increasing levels of cortisol cause by stress. Is more than what I eat. I am a careful eater. Stress is not only the situation but my ongoing health issues. Sleep combats the cortisol effect. Sleep tight, every one! If it really does not work I have a warm drink and put head phones on and listen to something, often a few moments is all that is needed.
Really bad night, I nap when my special love sleeps or watches sport in the chair next to him.

 

[Sad Staffs]

Sleep is a problem. I am trying to alter my pattern. I try to do peaceful things for an hour before bed. A slow potter. No TV that would play on my mind and intrude into my dreams.
Of course I wake up during the night, sometime because someone disturbs sometimes just because of me.
I am finding a sleep app helps. At the moment I am using the free part of sonic sleep. It is relaxing and has relaxation, I rather like Brahms Lulaby!
They suggest the the eight hour programme. On waking a sound comes on gently increasing. It does not stop me waking up but it just nudges me back to sleep because the waking sound has not been heard. Without it I tend to wake and start thinking or checking emails and stuff I need on the iPad. Sounds odd but it is a bit like a nanny, perhaps. Another is Sleepio, this was invented by a university. It lets you chart the pattern. Most of us sleep more than we think. Sleep is so important it affects our own healing, hormones and so much more. I am having a weight issue, so sleep is important for that. I am sure increasing levels of cortisol cause by stress. Is more than what I eat. I am a careful eater. Stress is not only the situation but my ongoing health issues. Sleep combats the cortisol effect. Sleep tight, every one! If it really does not work I have a warm drink and put head phones on and listen to something, often a few moments is all that is needed.
Really bad night, I nap when my special love sleeps or watches sport in the chair next to him.

Really useful and helpful post, thank you. I will look into the apps. I do listen to my favourite sad songs, and find my iPod on the floor next morning turned off, not knowing I’ve done it.
I hope you have a good sleep tonight.
Take care xx

 

[AliceA]

And you, sweet dreams, xxx