Hating myself

[Pots and Pans]

Thanks for support anyway. Am sure I will post again as I figure only others dealing with this can understand really the day to day struggles. Got to go now as need to put shoes on and make breakfast!

 

[Ramblingrose]

A big problem is that Mum has very little memory left so doesn't recall that she has to be helped to wash, get dressed, constantly asks the same questions, hides things and sees imaginary people. Its no wonder I suffer with tension headaches.

 

[wendy e]

I told myself some time ago that once my husband became incontinent he would have to go into full time care. But it happened over a period of time and I found I was dealing with it before I realised.
When the dementia was causing him to act like an overgrown toddler, then that was how I saw him. So when it came to cleaning his bottom and putting incontinence pull-ups on him, I was just coping with a toddler. I still love him, but not as my husband. I struggle to remember him as a loving husband, mainly because I push those thoughts away. Some days do seem worse than others. I am desperate to get him into respite. When I considered it was just before we went into the first lockdown. So I've never been able to get any respite so far. I do worry that when I do I won't want him back.

Thanks for this. In all the books I've read it say not to treat the person as a child but it's very hard not to. I did manage to have him in respite during lockdown and was ready I thought to have him home but now part of me wished I hadn't. Don't know how long I will manage until he goes again. Can't wait till the end of lockdown. Sure it will make a big difference.

 

[None the Wiser]

I told myself some time ago that once my husband became incontinent he would have to go into full time care. But it happened over a period of time and I found I was dealing with it before I realised.
When the dementia was causing him to act like an overgrown toddler, then that was how I saw him. So when it came to cleaning his bottom and putting incontinence pull-ups on him, I was just coping with a toddler. I still love him, but not as my husband. I struggle to remember him as a loving husband, mainly because I push those thoughts away. Some days do seem worse than others. I am desperate to get him into respite. When I considered it was just before we went into the first lockdown. So I've never been able to get any respite so far. I do worry that when I do I won't want him back.

Like you @jenniferjean Im desperate for some respite, but am worried that I won’t want my husband back, or feel I can do it anymore. Lockdown restrictions re care homeshave held me in check!

 

[DreamsAreReal]

It sounds like many of us feel that other people are much better carers and copers than we are. Are we all just muddling along, wondering if we’re doing it right and feeling like failures?

Does anyone know if there’s a course you can do (after covid obv) that shows you the right way to do the practical “hands on” things?

Had to take pwd to hospital appt recently and the nurse came out to the car with us and when she saw me awkwardly dithering and holding pwd’s elbow, she showed me how to guide her with my arm across her back at waist level. It felt much more secure, to pwd and to me.

 

[angelict]

It sounds like many of us feel that other people are much better carers and copers than we are. Are we all just muddling along, wondering if we’re doing it right and feeling like failures?

Does anyone know if there’s a course you can do (after covid obv) that shows you the right way to do the practical “hands on” things?

Had to take pwd to hospital appt recently and the nurse came out to the car with us and when she saw me awkwardly dithering and holding pwd’s elbow, she showed me how to guide her with my arm across her back at waist level. It felt much more secure, to pwd and to me.

Give yourself a pat on the back for getting them to the hospital perhaps try your local authority website under social care and see what that brings up. If not see if there are any support groups in your area they may be able to help or advise you ?

 

[jenniferjean]

Does anyone know if there’s a course you can do (after covid obv) that shows you the right way to do the practical “hands on” things?

I was offered the chance to go on a course some time ago. However I was not able to take my husband with me and there was nowhere where I could leave him or have someone take care of him. So I wasn't able to go.

 

[Jacques]

I was offered the chance to go on a course some time ago. However I was not able to take my husband with me and there was nowhere where I could leave him or have someone take care of him. So I wasn't able to go.

That is the problem. I also would like to go on a course but do not have any help. Maybe an on line course which could be downloaded would help.

 

[canary]

It sounds like many of us feel that other people are much better carers and copers than we are. Are we all just muddling along, wondering if we’re doing it right and feeling like failures?

Yes, I think that is exactly what happens. It is all too easy to downplay our own problems and in our own minds its seems that everyone else is coping far better and with much worse problems, but Ill bet its not true.

 

[pippylongstocking]

I know that we all hate what dementia does to our loved ones but I am beginning to hate what it's doing to me.
As I've said before my partner is quite far through the dementia journey. He is physically quite well but is now pretty well incontinent,cannot communicate as his words make no sense,sleeps a lot,and doesn't seem to understand what's being said to him. He would go and wander if I didn't keep the doors locked. He also has nights when he is up and wandering round the house for hours.
He is a shadow of himself ,as he was the life and soul of a gathering,liked to joke and had a great sense of humour.
I would freely admit that being a carer does not come easily to me. I find that I am becoming more impatient with him. It's often the small things that tip the balance. For example, he has to be properly ready for bed with incontinence pad etc but often refuses to get changed. Getting him ready can take a while. In the mornings he will refuse to wear what I've laid out,spends hours in wet pyjamas before he'll get dressed. Yesterday we had an episode with a soiled incontinence pad which he'd laid on the table! I had to make him have a shower to get cleaned up as he was smeared in excrement.
I find myself getting annoyed with him and at times being downright horrible . I seem to be always having to tell him what to do or not to do. Once I've had an outburst I vow not to repeat it but the 24/7 responsibility gets me down. I feel guilty as I feel I should be making his days more pleasant but there is so little he is able to do. Even TV programmes don't mean much to him now. He sleeps through a lot of it. We can't have visitors because of Covid or even go out for a coffee . I feel stuck in an endless loop .
I wish I could make life better for him.

 

[pippylongstocking]

I often come on this site, but don't seem to read too many threads which I can identify with. Tonight, I have read your post Bettysue and I could have written it myself!! He actually does sleep all night now, but during the day just wanders around and around and around the house. I can't take my eyes of of him, because he picks things up, puts them in obscure places, breaks them or tries to eat them, whether they are edible or not! Raw chicken that I have chopped up ready for the pan, I turn round to put the onions in first, turn back round and he is munching on the raw chicken! If the dog leaves any food, that will go, if I'm not quick off the mark, bananas with the skins on, food in the container waiting to go out in the compost bin! MH is doubly incontinent and the day seems to go from one pad change to the next.He never wants to get out if the bed in the morning, but is soaking wet.I manage to eventually get him up and into the bathroom, but then the battle starts to try and get him undressed, as he will do everything possible to prevent this. He grabs his pajama bottoms and stiffens his arms so I can't get his top off, he grabs my arms and wrists and squeezes them so tightly.When we get to the next stage, it is taking me longer and longer to persuade him to get into the shower. Then, there is the whole trying to get him clean, without being drowned myself. Breakfast then which along with other meals, is a messy affair. I cannot leave him with a cup, as he will just tip it upside down. He thinks a beaker belongs to our grandson, so doesn't use it. All of this takes up most if the morning, until its nearly time for another battle to change his pad!!!! And so the day goes on........... He hasn't got any speech, cannot understand when I speak to him, just gets angry with me because he doesn't know what I am saying. He doesn't watch TV, not interested in music. We used to walk with the dogs every day, but he doesn't walk far now, he seems to not know how to. He, like your husband, was the life and soul of the party, always on the go, very sporty.He is only 64, I am 59 and I feel robbed of the time of life when we had so many plans. I, like you, hate myself, because I lose my patience and cant find anything that I can do to make his life better. I am (was) a health professional and am instinctively a caring person, but I am finding it so hard.I know that he can't help his behaviour, butbut doesn't make it any easier. Every day, I think that I will take deep breaths and stay calm and remember that his brain isn't functioning properly, but it doesn't always happen. Sorry, bit of a long post, but just to let you know that you aren't alone.

 

[jenniferjean]

I often come on this site, but don't seem to read too many threads which I can identify with. Tonight, I have read your post Bettysue and I could have written it myself!! He actually does sleep all night now, but during the day just wanders around and around and around the house. I can't take my eyes of of him, because he picks things up, puts them in obscure places, breaks them or tries to eat them, whether they are edible or not! Raw chicken that I have chopped up ready for the pan, I turn round to put the onions in first, turn back round and he is munching on the raw chicken! If the dog leaves any food, that will go, if I'm not quick off the mark, bananas with the skins on, food in the container waiting to go out in the compost bin! MH is doubly incontinent and the day seems to go from one pad change to the next.He never wants to get out if the bed in the morning, but is soaking wet.I manage to eventually get him up and into the bathroom, but then the battle starts to try and get him undressed, as he will do everything possible to prevent this. He grabs his pajama bottoms and stiffens his arms so I can't get his top off, he grabs my arms and wrists and squeezes them so tightly.When we get to the next stage, it is taking me longer and longer to persuade him to get into the shower. Then, there is the whole trying to get him clean, without being drowned myself. Breakfast then which along with other meals, is a messy affair. I cannot leave him with a cup, as he will just tip it upside down. He thinks a beaker belongs to our grandson, so doesn't use it. All of this takes up most if the morning, until its nearly time for another battle to change his pad!!!! And so the day goes on........... He hasn't got any speech, cannot understand when I speak to him, just gets angry with me because he doesn't know what I am saying. He doesn't watch TV, not interested in music. We used to walk with the dogs every day, but he doesn't walk far now, he seems to not know how to. He, like your husband, was the life and soul of the party, always on the go, very sporty.He is only 64, I am 59 and I feel robbed of the time of life when we had so many plans. I, like you, hate myself, because I lose my patience and cant find anything that I can do to make his life better. I am (was) a health professional and am instinctively a caring person, but I am finding it so hard.I know that he can't help his behaviour, butbut doesn't make it any easier. Every day, I think that I will take deep breaths and stay calm and remember that his brain isn't functioning properly, but it doesn't always happen. Sorry, bit of a long post, but just to let you know that you aren't alone.

You definitely need some help. Can you not get a carer in to shower him in the morning? Do you have carers at all? Have you had a carer's assessment? I thought I had problems, but you can't go on like this.

 

[Bunpoots]

Wow! @pippylongstocking I don’t know how you’re still sane!

I agree with @jenniferjean you definitely need some help. If you find the right carers they become welcome visitors and, if your OH is anything like my dad was, he’ll be more co-operative with them. Dad’s carers could get him up and dressed in 20 minutes when it used to take me the best part of 2 hours.

 

[Sarasa]

@pippylongstocking, that all sounds far too much for one person to be doing. I think it might be a good idea to phone the helpline and talk through your options for getting more care for your husband 0333 150 3456 and dementia.connect@alzheimers.org.uk.

 

[None the Wiser]

@pippylongstocking I resisted having carers into the house for a long time, but when it got to the point of having to change my husband several times a day social services persuaded me to have someone come in in the morning to change, wash/shower, dress him, and give him breakfast. I was dreading it, but managed to find a PA/Carer who comes at the same time every day (except Sunday), for an hour. It has made such a difference not to have to do this every day. I still have to change him, feed him etc at other times during the day, but it has really been worth it. Having the consistency of one person has helped too.

I urge you to get some help If you possibly can. You won’t be able to carry on like that, and for your own sanity really shouldn’t try to.

 

[canary]

Im another one who has found having carers in a godsend. OH is not as advanced as yours, but having someone in to help him wash, dress etc and to sort out his catheter makes so much difference.

We use an agency, which does mean that he has a few different people coming in, but they are organised into a "cell" to reduce the number of contacts. Mostly we get the the same two people with a different person occasionally to cover Saturdays (it depends who is on duty then) and to cover holidays and any sickness. They always arrive fully PPE'ed up and are tested every week for covid. They are also getting their covid jabs this week - one of our regulars got it yesterday. So far, there have been no cases of covid within the agency apart from one chap who apparently picked it up while he was in hospital and we were fully informed about it even though he was not in OHs "cell". It feels very safe to allow them in.

 

[pippylongstocking]

I know that we all hate what dementia does to our loved ones but I am beginning to hate what it's doing to me.
As I've said before my partner is quite far through the dementia journey. He is physically quite well but is now pretty well incontinent,cannot communicate as his words make no sense,sleeps a lot,and doesn't seem to understand what's being said to him. He would go and wander if I didn't keep the doors locked. He also has nights when he is up and wandering round the house for hours.
He is a shadow of himself ,as he was the life and soul of a gathering,liked to joke and had a great sense of humour.
I would freely admit that being a carer does not come easily to me. I find that I am becoming more impatient with him. It's often the small things that tip the balance. For example, he has to be properly ready for bed with incontinence pad etc but often refuses to get changed. Getting him ready can take a while. In the mornings he will refuse to wear what I've laid out,spends hours in wet pyjamas before he'll get dressed. Yesterday we had an episode with a soiled incontinence pad which he'd laid on the table! I had to make him have a shower to get cleaned up as he was smeared in excrement.
I find myself getting annoyed with him and at times being downright horrible . I seem to be always having to tell him what to do or not to do. Once I've had an outburst I vow not to repeat it but the 24/7 responsibility gets me down. I feel guilty as I feel I should be making his days more pleasant but there is so little he is able to do. Even TV programmes don't mean much to him now. He sleeps through a lot of it. We can't have visitors because of Covid or even go out for a coffee . I feel stuck in an endless loop .
I wish I could make life better for him.

@pippylongstocking I resisted having carers into the house for a long time, but when it got to the point of having to change my husband several times a day social services persuaded me to have someone come in in the morning to change, wash/shower, dress him, and give him breakfast. I was dreading it, but managed to find a PA/Carer who comes at the same time every day (except Sunday), for an hour. It has made such a difference not to have to do this every day. I still have to change him, feed him etc at other times during the day, but it has really been worth it. Having the consistency of one person has helped too.

I urge you to get some help If you possibly can. You won’t be able to carry on like that, and for your own sanity really shouldn’t try to.

Thanks, I know I'm my own worst enemy, always feel that I can do it all myself and I should do it myself. I will look into this.

 

[pippylongstocking]

@pippylongstocking, that all sounds far too much for one person to be doing. I think it might be a good idea to phone the helpline and talk through your options for getting more care for your husband 0333 150 3456 and dementia.connect@alzheimers.org.uk.

Thanks, it is getting too much, so I will look into options available.

 

[pippylongstocking]

Wow! @pippylongstocking I don’t know how you’re still sane!

I agree with @jenniferjean you definitely need some help. If you find the right carers they become welcome visitors and, if your OH is anything like my dad was, he’ll be more co-operative with them. Dad’s carers could get him up and dressed in 20 minutes when it used to take me the best part of 2 hours.

Haha,probably not completely sane!! Thanka fir the advice.

 

[pippylongstocking]

You definitely need some help. Can you not get a carer in to shower him in the morning? Do you have carers at all? Have you had a carer's assessment? I thought I had problems, but you can't go on like this.

I think you are right and I need to sort myself out. Thanks