Husband with dementia

[Despondent]

My husband was diagnosed 3 years ago but will not accept there is anything wrong with him. He really thinks he is still doing everything he used to. He was very clever with his hands could make ,repair or build anything. Even built a house from scratch . He still thinks he's capable but even to using a screw he is unable.
He sleeps all day getting up between 6pm - 8pm sits in the chair & sleeps going to bed around 3am so no liquid or food all day difficult to get him to have a couple of cups of coffee when up will not drink water at all one cup of coffee can last a couple of hours. Thank God still knows us & can be very loving still but very stubborn at times. I have been I'll for over a year & waiting for a major operation which has now been delayed. I am in a lot of pain & get cross because of it. He gets hurt as he thinks he is doing everything for me & I get upset that I have been cross with him. He insists he is dry when he is wet he has prostate cancer but says he hasnt he wont wear pads as he thinks he doesn't wet. He goes to the toilet but leaks afterwards medication hasnt helped. How can I get him to accept his illness or is this normal . Can he fight it at all . I hate to see a very loving man disappear before me. Sorry for the long post need some to talk to.

 

[Izzy]

Hello and welcome to the forum @Despondent,

I’m so sorry to read about your husband. It is incredibly sad but here you will find people who understand and listen and support you. I’m glad you’ve found the forum.

 

[Duggies-girl]

Hi @Despondent Not recognising that there is any kind of problem is one of the hardest things to cope with and sadly it is very common. He is not refusing to accept it, he truly does not know that there is anything wrong and in his mind he is just as he always has been.

It is frustrating and can drive you around the bend at times but give up trying to convince him because you never will. It's part of the illness and many on here have experience of it.

You haven't mentioned whether you get any help or not. It sounds like you do do with some help even if it is just for getting him out of bed in the mornings. You will get other replies on here with helpful ideas so stick around.

 

[Despondent]

Hi @Despondent Not recognising that there is any kind of problem is one of the hardest things to cope with and sadly it is very common. He is not refusing to accept it, he truly does not know that there is anything wrong and in his mind he is just as he always has been.

It is frustrating and can drive you around the bend at times but give up trying to convince him because you never will. It's part of the illness and many on here have experience of it.

You haven't mentioned whether you get any help or not. It sounds like you do do with some help even if it is just for getting him out of bed in the mornings. You will get other replies on here with helpful ideas so stick around.
[/QUOTE Dougies-girl

Thankyou I am having a bad day & just needed not to feel so alone. I don't have help as it's would distress him. Except for the fact I have a son who lives with us (he has some mental health problems ) Who when ok will help with his stepdad calling him to get up tries to make him drink more but doesn't understand the complexity of dementia. He's in bed most of the time too. My husband has 2 daughters but we never see them & say their dad is fine & tell me just to be patient. It's just so hard its awful to see someone you love so much going from you & I fear the future if he someday doesn't know me. I am so worried about him not drinking any one any solutions

 

[Despondent]

Thankyou I am having a bad day & just needed not to feel so alone. I don't have help as it's would distress him. Except for the fact I have a son who lives with us (he has some mental health problems ) Who when ok will help with his stepdad calling him to get up tries to make him drink more but doesn't understand the complexity of dementia. He's in bed most of the time too. My husband has 2 daughters but we never see them & say their dad is fine & tell me just to be patient. It's just so hard its awful to see someone you love so much going from you & I fear the future if he someday doesn't know me. I am so worried about him not drinking any one any solutions

 

[Linton]

Hi @dispondent. I know how you feel as I also see my husband disappear before my eyes. It’s 2 years since he was diagnosed but needed care earlier as we thought something wasn’t right He also is not happy with help coming in which makes it so difficult especially in the lockdown situation when even family couldn’t call in He does know he has the condition and we do talk about it on days when he can understand but it is physically and emotionally draining all I can say is that you’re not alone and many of us feel the same. Love to you xx

 

[PatAnn]

Hi @dispondent. I know how you feel as I also see my husband disappear before my eyes. It’s 2 years since he was diagnosed but needed care earlier as we thought something wasn’t right He also is not happy with help coming in which makes it so difficult especially in the lockdown situation when even family couldn’t call in He does know he has the condition and we do talk about it on days when he can understand but it is physically and emotionally draining all I can say is that you’re not alone and many of us feel the same. Love to you xx

Will he eat jelly ?my husband loves it I have just purchased jelly drops as well got them on line expensive but he is eating them I give him jelly and ice cream every night I also make up thick milk shakes and keep in fridge acts as a food as well as a drink xx

 

[Despondent]

Hi @dispondent. I know how you feel as I also see my husband disappear before my eyes. It’s 2 years since he was diagnosed but needed care earlier as we thought something wasn’t right He also is not happy with help coming in which makes it so difficult especially in the lockdown situation when even family couldn’t call in He does know he has the condition and we do talk about it on days when he can understand but it is physically and emotionally draining all I can say is that you’re not alone and many of us feel the same. Love to you xx

Hi Linton
Thankyou for your support. How did you get your husband to realise there was something wrong. I am finding it very difficult when he denies any problem to everyone. When on our own easier but in company it's a problem. Also how do you manage with him taking liquid . Love to you as well A terrible illness

 

[canary]

Some people with dementia have insight into their condition, some have partial insight (my OH knows that he has physical problems, but denies that his behaviour and abilities have changed at all) and some people lose all insight so that they cannot comprehend that they have any problems at all. My mum was in this last category - not only would she deny that she has dementia, but she denied ever having problems like arthritis and glaucoma that she had had for years before dementia struck. I remember seeing her in her care home at the later stages of dementia when she was doubly incontinent and her mobility was reduced to a shuffle using a zimmer frame. She was sat in a chair with her hand on the zimmer frame when I asked her how she was and she told me that she was very well, had nothing wrong with her and kept herself fit by running up and down the stairs.

If someone has lost insight, they cannot regain it. You cannot bring them back into reality how ever much you try and it will only make them angry or upset, because in their minds they know that there is nothing wrong. In order to bridge that gap you have to use what is called Therapeutic Untruths, known on here as love lies and what Terry Pratchett called "kidology". You have to tell them something that will make sense to their changed reality in order to get them to agree to what they need, even if it is not actually true.

I have got carers in for OH to help him wash/shower and dress by using the excuse that his balance is so poor that he could do with some extra hands. This is true and he knows that his balance is poor, but actually the real reason that he needs help is because he has forgotten what he actually has to do and wasnt using any soap/shower gel.

Im sure other people will be here with suggestions of what they did. Think about what excuse he would accept.

 

[Weasell]

It is common for people with dementia to refuse to accept anything is wrong with them.
Please look at the compassionate communication link that has helped me.
A few random thoughts of things I might try.

Dementia changes the taste buds. Very often people start to crave sweet foods.
I would certainly be trying to add an extra teaspoon to his coffee, making it sweeter than normal.
( A spoonful of sugar helps the coffee go down?)

Could you wait until he is getting a little bit hungry and serve a small bowl of walkers crisps and a appealing cold drink. the reason they sell crisps in pubs is the salt makes people thirsty and they buy more drinks! ( yes I know the crisps are bad for him, but scratching around for ideas here!)

Someone mentioned jelly which is a good one. Remember wet foods all contain liquid, custard, rice pudding, fruit etc.

I may be buying some Tena man pants and saying I need to reduce the laundry as I am feeling unwell ( nothing to do with you dear !) and see if he could accept wearing them ? Cheaper at Aldi and free if obtain on prescription!

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

Very difficult times for you, wishing you well.

 

[Duggies-girl]

I second what @canary said. My skeletal dad while sat in his chair with his zimmer frame sat in front of him, told his doctor straight to his face that he was very well, thank you and that he did all of his own shopping and cooking and that he regularly walked to the village shop. He also added that I helped him out every now and then.

I just smiled at the doctor who had made a special trip to give dad a flu jab because I couldn't get him over the doorstep safely. Dad also suggested that the doctor should give me the flu jab instead because I probably needed it more than he did. Always had an answer for everything but he never had any form of dementia

 

[Linton]

Hi. I feel we are very lucky that on good days we can talk about his condition. He understands that he has hallucinations and gets strong feelings of paranoia that I’m with other people and am leaving him. The feeling passed after a few hours and he’s fine. He also has times he’s convinced there are three of me (I wish) and asked if I am his wife or one of the others and where do I go after I be finished. It’s so hard to go through all this but so grateful for the times we can talk about it. I feel for everyone going through this xxx

 

[Despondent]

Some people with dementia have insight into their condition, some have partial insight (my OH knows that he has physical problems, but denies that his behaviour and abilities have changed at all) and some people lose all insight so that they cannot comprehend that they have any problems at all. My mum was in this last category - not only would she deny that she has dementia, but she denied ever having problems like arthritis and glaucoma that she had had for years before dementia struck. I remember seeing her in her care home at the later stages of dementia when she was doubly incontinent and her mobility was reduced to a shuffle using a zimmer frame. She was sat in a chair with her hand on the zimmer frame when I asked her how she was and she told me that she was very well, had nothing wrong with her and kept herself fit by running up and down the stairs.

If someone has lost insight, they cannot regain it. You cannot bring them back into reality how ever much you try and it will only make them angry or upset, because in their minds they know that there is nothing wrong. In order to bridge that gap you have to use what is called Therapeutic Untruths, known on here as love lies and what Terry Pratchett called "kidology". You have to tell them something that will make sense to their changed reality in order to get them to agree to what they need, even if it is not actually true.

I have got carers in for OH to help him wash/shower and dress by using the excuse that his balance is so poor that he could do with some extra hands. This is true and he knows that his balance is poor, but actually the real reason that he needs help is because he has forgotten what he actually has to do and wasnt using any soap/shower gel.

Im sure other people will be here with suggestions of what they did. Think about what excuse he would accept.

Thankyou I will try your suggestions. Carers are definitely a nono unfortunately I have just read another thread and I am doing lots of things wrong Never faced this situation before need to learn a lot

 

[Despondent]

Some people with dementia have insight into their condition, some have partial insight (my OH knows that he has physical problems, but denies that his behaviour and abilities have changed at all) and some people lose all insight so that they cannot comprehend that they have any problems at all. My mum was in this last category - not only would she deny that she has dementia, but she denied ever having problems like arthritis and glaucoma that she had had for years before dementia struck. I remember seeing her in her care home at the later stages of dementia when she was doubly incontinent and her mobility was reduced to a shuffle using a zimmer frame. She was sat in a chair with her hand on the zimmer frame when I asked her how she was and she told me that she was very well, had nothing wrong with her and kept herself fit by running up and down the stairs.

If someone has lost insight, they cannot regain it. You cannot bring them back into reality how ever much you try and it will only make them angry or upset, because in their minds they know that there is nothing wrong. In order to bridge that gap you have to use what is called Therapeutic Untruths, known on here as love lies and what Terry Pratchett called "kidology". You have to tell them something that will make sense to their changed reality in order to get them to agree to what they need, even if it is not actually true.

I have got carers in for OH to help him wash/shower and dress by using the excuse that his balance is so poor that he could do with some extra hands. This is true and he knows that his balance is poor, but actually the real reason that he needs help is because he has forgotten what he actually has to do and wasnt using any soap/shower gel.

Im sure other people will be here with suggestions of what they did. Think about what excuse he would accept.

Thankyou I will try your suggestions. Carers are definitely a nono unfortunately I have just read another thread and I am doing lots of things wrong Never faced this situation before need to learn a lot

Will he eat jelly ?my husband loves it I have just purchased jelly drops as well got them on line expensive but he is eating them I give him jelly and ice cream every night I also make up thick milk shakes and keep in fridge acts as a food as well as a drink xx

Good suggestions will definitely use them Thankyou. The bigger problem is him staying in bed for around 15 hrs a day without drinking really worried it will affect his kidneys.

 

[canary]

Carers are definitely a nono unfortunately

Are you trying to get him to agree to them, or have you tried them?

The default answer from someone with dementia is no and if you wait for them to agree, you will wait forever.

 

[jaymor]

If I asked my husband if he wanted a drink the answer was always no thank you so II stopped asking if he wanted a drink. I’d place a cup of tea or a cold drink in front of him and say “ there is your tea “ in a way that inferred he had asked for it. He did not drink it every time but he certainly drank more than he left. Jelly, ice cream, milkshakes and smoothies were also everyday attempts at getting his liquid intake up. Soup in a mug too.

 

[Woo2]

I didn’t not mention carer’s as the answer would of been no , I said it was a friend of mine who was learning a new job and needed to volunteer with not ill people first , it seems absurd that they would accept this as we presume they still think like us and can spot a giant fib, and also it’s lying which we don’t like to do but needs must and the earlier you try it the better . You may be pleasantly surprised as I was , I was on edge and they pick up on that so have to try and exude calm .

 

[Woo2]

Oh yes don’t ask , they invariably say no , I place a drink in Mums hand and she always drinks it , she will watch me and copy so I sit in front of her .

 

[Despondent]

Are you trying to get him to agree to them, or have you tried them?

The default answer from someone with dementia is no and if you wait for them to agree, you will wait forever.

I am doing my best to care for him as he is a very private person & would be horrified if a carer came .I am able at present just so unsure how to handle certain things never coming across dementia before. This forum has been so helpful for reassurance & advice.Thankyou maybe the time will come when I have to rethink an outside carer cross that bridge later

 

[canary]

Its much better to get a carer in as soon as they need it because that way they are more likely to accept it. Also, you need to be able to accept support or else you will burn out. Believe me, Ive been there and tried to do it all by myself too long.