Bad feelings

[Dutchman]

Has anyone felt that they’re the worse carer in the world? I know I should be doing all the right things like being patient, not getting irritated, having compassion, but I do the opposite and it seems all my worse feeling come out. We’re driving back from seeing our daughter, about 4 hour drive, my wife unable to converse with like she used to, me running out of things to say, and I’m hurting inside remembering our life when talking all the time together was normal. That’s never going to happen again and it hurts. And to add to that is the fact that it going to get worse in so many ways. Do I feel sorry for myself ? Yes I do and I can’t even communicate my hurt to my wife and get sympathy and support. Someone said to me that by the time it reaches the last stages emotions are numbed anyway...I don’t want my love to die but love gets a battering with dementia and perhaps it’s inevitable.

 

[witts1973]

I know where you're coming from it's like being in a state of shock as things have changed,I get paranoid that I'm not always being the best person that I can be,it's natural to feel like that,if you can try and get out for a walk now again if possible to clear your head,I'm sorry I haven't got anything better to offer that that,take care

 

[Duggies-girl]

Has anyone felt that they’re the worse carer in the world? I know I should be doing all the right things like being patient, not getting irritated, having compassion, but I do the opposite and it seems all my worse feeling come out. We’re driving back from seeing our daughter, about 4 hour drive, my wife unable to converse with like she used to, me running out of things to say, and I’m hurting inside remembering our life when talking all the time together was normal. That’s never going to happen again and it hurts. And to add to that is the fact that it going to get worse in so many ways. Do I feel sorry for myself ? Yes I do and I can’t even communicate my hurt to my wife and get sympathy and support. Someone said to me that by the time it reaches the last stages emotions are numbed anyway...I don’t want my love to die but love gets a battering with dementia and perhaps it’s inevitable.

I think those feelings are normal @Dutchman This illness affects the carer so much more than the person who has the disease, it's not surprising that we get down. I care for my dad and I know it would be so much worse if it were my husband.

 

[canary]

I think we all get like that @Dutchman
I probablt sound very upbeat and positive on here, but its difficult at 5:00am when your PWD insists on getting up and is then heartily sick...........
We are all human, not superman or Mary Poppins. It sounds like you are doing fine - even if you dont feel it.

 

[vmmh]

Pray for strength and it will come, but it takes time. Understand that we all go through this phase. You will handle it better as time goes by but right now I know it feels very bad.

 

[kindred]

Has anyone felt that they’re the worse carer in the world? I know I should be doing all the right things like being patient, not getting irritated, having compassion, but I do the opposite and it seems all my worse feeling come out. We’re driving back from seeing our daughter, about 4 hour drive, my wife unable to converse with like she used to, me running out of things to say, and I’m hurting inside remembering our life when talking all the time together was normal. That’s never going to happen again and it hurts. And to add to that is the fact that it going to get worse in so many ways. Do I feel sorry for myself ? Yes I do and I can’t even communicate my hurt to my wife and get sympathy and support. Someone said to me that by the time it reaches the last stages emotions are numbed anyway...I don’t want my love to die but love gets a battering with dementia and perhaps it’s inevitable.

With you all the way. I thought my love was dying under the terrible strain of what I was going through with husband, like living, enduring as a slave in a madhouse. I thought love was irrelevant, regarded myself as a human unit caring for a broken human unit, only way I could get through, except writing I must endure 100 times each night.
The Social Worker from the hospital (the only one who really helped me, she actually said, I am here, I will help, I will take over now ...) said that when my husband went into residential care, I could be a wife again. And this proved true. I am overwhelmed with love with him so often when I go in. That's what my thread, Please don't throw me away is all about, what I never thought possible, but what proved to be possible.
I am sure I was a far worse carer than you, sweetheart! with love, Kindred.

 

[Philbo]

Hi Dutchman

I know exactly how you feel and I often hate myself whenever I find that my patience has deserted my and I snap at my dear wife.

We are nearly 5 years into our "journey" (we're both coming up to 68) and one of the first things to be affected were her speech, comprehension and self-awareness. So she can never tell me how's she's feeling, which maybe just as well, though as I've posted before, she seems to be in a permanently happy world of her own.

Many will say that I am lucky and I know many carers have to suffer the anger, violence and paranoia that affects many PWD. However, when you've coped with your loved one all day, you're cream-crackered and your loved one can't follow the most basic of requests (like - lift your foot up so I can pull your PJ's on - for the umpteenth time!!), the fact that they're smiling at you only seems to make matters worse?

It will be our 47th wedding anniversary next week and I so miss celebrating it together. Sure, she's still here with me but it all seems so hollow now. Our youngest son usually takes it on himself to get me cards, "signed" by my wife, which is very thoughtful but it is a times like these that you can feel most lonely?

I wish you well.
Phil

 

[canary]

it is a times like these that you can feel most lonely

Very true
I think things like birthdays, anniversaries and Christmas really bring home how much they have changed. Everyone else is looking on and saying Happy [whatever] and congratulations, which is nice, but somehow makes you more aware that your PWD has no idea

 

[Dutchman]

Thanks everyone with your reassuring remarks. It’s a comfort to know I’m not as bad as I thought. OH asleep next to me on the sofa. I looked at a picture of her when we first married 28 years ago . What a very beautiful lady, full of life, extremely intelligent, running a department and my support through everything. It doesn’t do you any favours looking at old photos, it just breaks your heart never having that person again, never having that vibrancy again. I suppose the morale is that we always make the most of every moment when things are normal and good, but, of course, we tend to take things for granted assuming nothing will change. Keep writing people as you are all a wonderful support.

 

[Rosie4u]

Thanks everyone with your reassuring remarks. It’s a comfort to know I’m not as bad as I thought. OH asleep next to me on the sofa. I looked at a picture of her when we first married 28 years ago . What a very beautiful lady, full of life, extremely intelligent, running a department and my support through everything. It doesn’t do you any favours looking at old photos, it just breaks your heart never having that person again, never having that vibrancy again. I suppose the morale is that we always make the most of every moment when things are normal and good, but, of course, we tend to take things for granted assuming nothing will change. Keep writing people as you are all a wonderful support.

I think you’re having my day.I am sitting here feeling like I am the evil one as I’ve got cross with my OH for moving things Yet Again.I know it’s trivial but today I want to weep and your first post summed it up for me. That overwhelming loss and guess what some days it overwhelms.
Thank heavens there are people here who understand.

 

[Dutchman]

I think you’re having my day.I am sitting here feeling like I am the evil one as I’ve got cross with my OH for moving things Yet Again.I know it’s trivial but today I want to weep and your first post summed it up for me. That overwhelming loss and guess what some days it overwhelms.
Thank heavens there are people here who understand.

I’m feeling bad again and I thought I’d done the right thing. Everywhere I read I’m told that telling the truth to your OH could possibly be the wrong thing. So when the letter came yesterday saying she was to stop driving immediately I hid it and will take her licence from her purse. There are other thing I’ve hid, not told the truth about, bended the facts about, all to stop her being upset. I feel an awful person about this as we always were open and could trust one another. Now it seems it’s all cloak and dagger most of the time. Does anyone else feel this and do we reconcile ourselves to the fact that that’s our lives are now?

 

[canary]

I’m feeling bad again and I thought I’d done the right thing. Everywhere I read I’m told that telling the truth to your OH could possibly be the wrong thing. So when the letter came yesterday saying she was to stop driving immediately I hid it and will take her licence from her purse. There are other thing I’ve hid, not told the truth about, bended the facts about, all to stop her being upset. I feel an awful person about this as we always were open and could trust one another. Now it seems it’s all cloak and dagger most of the time. Does anyone else feel this and do we reconcile ourselves to the fact that that’s our lives are now?

Oh, yes - it used to send my anxiety levels through the roof and it worried me that I would be found out, although I never was.
You sort of get used to it after a while and although it now makes me sad that I have to do it, I no longer feel guilty.

 

[Rosebush]

I’m feeling bad again and I thought I’d done the right thing. Everywhere I read I’m told that telling the truth to your OH could possibly be the wrong thing. So when the letter came yesterday saying she was to stop driving immediately I hid it and will take her licence from her purse. There are other thing I’ve hid, not told the truth about, bended the facts about, all to stop her being upset. I feel an awful person about this as we always were open and could trust one another. Now it seems it’s all cloak and dagger most of the time. Does anyone else feel this and do we reconcile ourselves to the fact that that’s our lives are now?

Whatever I say or do I am always wrong, but I am slowly getting used to it, so now I always smile and agree even though inside I am screaming. I hide all the post(as long as I get to it first) as it upsets him because he doesn't understand any of the bills or bank statements etc. Lx

 

[Wifenotcarer]

I have also 'lost it' today. In August, OH was booked into respite care for this coming week and engaged fully and happily with the SW who arranged it. The letter with the final details turned up on Thursday. He accused me of trying to 'shunt him off', planning to invite another man into the house while he is away, swearing, banging doors, etc. Then he grabbed the car Keys and said he was off (he no longer has a license nor insurance). I managed to remove the keys and hide them. Later he calmed down forgot all about it but started the same again at bed time and on Friday Morning. Today I let him have a long lie then helped him get washed and dressed in his brand new trousers, pants and shirt. Put his ear drops in and then couldn't find his Hearing Aids. I am sure they were on his bedside table last night. Have hunted high and low but failed to find them. Made his lunch, couldn't find him, eventually located him in the bathroom, with trousers, pants, shirt tail, socks and shoes, floor all sopping wet. He hasn't had an 'accident' like that since we were on holiday back in July.

I KNOW that all this aggravation is a reaction from OH to anxiety about his week away BUT........ I FEEL that this is all designed to make me cancel the respite and simply stay home and endure another week of being his slave 24/7.

 

[PalSal]

Hi Dutchman

I know exactly how you feel and I often hate myself whenever I find that my patience has deserted my and I snap at my dear wife.

We are nearly 5 years into our "journey" (we're both coming up to 68) and one of the first things to be affected were her speech, comprehension and self-awareness. So she can never tell me how's she's feeling, which maybe just as well, though as I've posted before, she seems to be in a permanently happy world of her own.

Many will say that I am lucky and I know many carers have to suffer the anger, violence and paranoia that affects many PWD. However, when you've coped with your loved one all day, you're cream-crackered and your loved one can't follow the most basic of requests (like - lift your foot up so I can pull your PJ's on - for the umpteenth time!!), the fact that they're smiling at you only seems to make matters worse?

It will be our 47th wedding anniversary next week and I so miss celebrating it together. Sure, she's still here with me but it all seems so hollow now. Our youngest son usually takes it on himself to get me cards, "signed" by my wife, which is very thoughtful but it is a times like these that you can feel most lonely?

I wish you well.
Phil

@PhilboWow....what a lovely son you have raised. A chip off his father's block, it sounds like.
Yes, by the end of the day...the communication problems are exasperated as I am tired and so is my husband. Lift foot. Brush teeth, go to the toilet. Find the head of the bed.
Exhausting.

 

[canary]

I KNOW that all this aggravation is a reaction from OH to anxiety about his week away BUT........ I FEEL that this is all designed to make me cancel the respite and simply stay home and endure another week of being his slave 24/7.

(((((((((((((hugs))))))))))))))) Youve only got another day

 

[Wifenotcarer]

(((((((((((((hugs))))))))))))))) Youve only got another day

Yes tomorrow has come, and refreshed by an unbroken 8 hours sleep, I'm ready to go on an adventure. (3 days in Glasgow for Conference.) Packing my bags this am I FOUND the hearing aids in my handbag and remembered that I had just handed them to OH when he pinched the car keys from my bag to make his bid for freedom. Daughter No.2 will hand them in when she visits her Dad this afternoon.

 

[Philbo]

I’m feeling bad again and I thought I’d done the right thing. Everywhere I read I’m told that telling the truth to your OH could possibly be the wrong thing. So when the letter came yesterday saying she was to stop driving immediately I hid it and will take her licence from her purse. There are other thing I’ve hid, not told the truth about, bended the facts about, all to stop her being upset. I feel an awful person about this as we always were open and could trust one another. Now it seems it’s all cloak and dagger most of the time. Does anyone else feel this and do we reconcile ourselves to the fact that that’s our lives are now?

My wife was always mad on her jewellery - not huge amounts but she had very good taste and she preferred fewer but better quality items.

Sadly, as her dementia got worse, she started to misplace items and would keep taking items off and forget where she'd put them (rings were a particular nightmare). The crunch came when she managed to loose her beloved gold ladies watch and despite ringing/visiting the three places we'd visited that afternoon, we never found it.

So I gradually started "hiding" items for safe keeping, which thankfully, as I did it piece by piece, she didn't seem to notice. But I felt really bad for doing it, especially with her engagement and wedding rings (both of which she never went out without wearing them).

My only consolation is that she'd have been heartbroken if she'd have lost them (under "normal" circumstances.

It was the same with her handbags, purse, bank cards etc - gradually removed stuff as she would leave them all over the place!

 

[Rosie4u]

I’m feeling bad again and I thought I’d done the right thing. Everywhere I read I’m told that telling the truth to your OH could possibly be the wrong thing. So when the letter came yesterday saying she was to stop driving immediately I hid it and will take her licence from her purse. There are other thing I’ve hid, not told the truth about, bended the facts about, all to stop her being upset. I feel an awful person about this as we always were open and could trust one another. Now it seems it’s all cloak and dagger most of the time. Does anyone else feel this and do we reconcile ourselves to the fact that that’s our lives are now?

This was one of the things that was important to us and now I find I hide things from him and don't always tell the truth.I feel like I am betraying myself and him in doing this but than have found that the truth doesnt work.
It doesnt feel right but the consolation is that it seems to work better for them

 

[Manc70]

This was one of the things that was important to us and now I find I hide things from him and don't always tell the truth.I feel like I am betraying myself and him in doing this but than have found that the truth doesnt work.
It doesnt feel right but the consolation is that it seems to work better for them

How true for us too @Rosie4u, it sounds so familiar. It kind of creeps up on you doesn’t it. I have to admit sometimes for me I bend the truth for a quiet life at times and other times to make him feel still worthwhile when he is low.