Hello

[Roseyb]

My husband was diagnosed with mild cognitive disorder a few years ago but it’s definitely progressing. We’ve just moved hundreds of miles from our friends to be near our children who, undoubtedly,will be a great support.
its me that’s struggling tho I feel guilty for it. I’m not as patient as I should be and find it hard to cope with all the denial (“I didn’t do that, I've never been near that” etc). I’m not looking to blame but find it hard when he gets cross with me and the kids always feel sorry for him. I realise that sounds very selfish! But I’m finding it so hard to be patient all the time and accept I am now his career rather than his partner.
sorry, I know many people are far worse off then this!

 

[sheepfield]

Ah, that's a big upheaval for you. You definitely don't sound selfish and please try not to feel guilty. I don't live with my mother in law who is still waiting for a memory clinic referral. At least she is compliant at the moment and recognises me but she does drive me up the wall with constant repetition when I visit. I'm glad to be able to come away but then I'm 'carer' at my own home for my autistic husband too!
I moved home some distance to live with my husband and I was grateful for new connections in carers groups. I wonder if you have explored that kind of thing? I try to have something each day just for me to relax or let off steam or whatever else I might need. I've been to an afternoon tea today, it's autism group tomorrow and I need to think of something for this Friday.

 

[Ellie2018]

You will find that this is the place to see that so many of us feel as you do. I certainly do, it’s hard to appreciate unless you’re there all the time, I only have one person who recognises how hard it is and she’s a neighbour who comes over 3/4 times a week. My OH checks everything with me, this shirt, these socks, the list is endless. Today he asked for sweets, I said we are going to lunch and looked round and he’s trying to keep his mouth still, saying he hasn’t got a sweet. It doesn’t sound much but when it’s every waking moment, I’d be amazed if people can do it with good grace all the time. I know people have much worse but I hate my own reality. Good luck with it all - my OH going to a day centre two days a week has helped me so much, something to think about at some point.

 

[sheepfield]

Ah yes, day centres and memory cafes etc sound good. There were people with dementia at my tea dance today, disco dancing! But it's so important to have time away from caring. My husband manages to work and has solitary hobbies so can be quite autonomous, giving me time to recharge my batteries, though other times he follows me round the house wanting attention.

 

[Gosling]

Hello @Roseyb and firstly welcome to this friendly and supportive forum.

I'm sorry to read about your husband's diagnosis and how it seems to be progressing. It's very tough for you, to keep being patient about the various things that happen. Please don't feel guilty. There were times when I totally lost patience, and just had to leave the house and cool down. Even knowing it's the dementia, and not the person, still makes it impossible sometimes to go over your head. You are not alone, so please don't feel selfish either.

Now that you've found us, you will find lots of information and support here from members that really do want to help. Take care.

 

[Roseyb]

Hello @Roseyb and firstly welcome to this friendly and supportive forum.

I'm sorry to read about your husband's diagnosis and how it seems to be progressing. It's very tough for you, to keep being patient about the various things that happen. Please don't feel guilty. There were times when I totally lost patience, and just had to leave the house and cool down. Even knowing it's the dementia, and not the person, still makes it impossible sometimes to go over your head. You are not alone, so please don't feel selfish either.

Now that you've found us, you will find lots of information and support here from members that really do want to help. Take care.

Thank you!

 

[Roseyb]

You will find that this is the place to see that so many of us feel as you do. I certainly do, it’s hard to appreciate unless you’re there all the time, I only have one person who recognises how hard it is and she’s a neighbour who comes over 3/4 times a week. My OH checks everything with me, this shirt, these socks, the list is endless. Today he asked for sweets, I said we are going to lunch and looked round and he’s trying to keep his mouth still, saying he hasn’t got a sweet. It doesn’t sound much but when it’s every waking moment, I’d be amazed if people can do it with good grace all the time. I know people have much worse but I hate my own reality. Good luck with it all - my OH going to a day centre two days a week has helped me so much, something to think about at some point.

Thank you, I need to explore what there may be in this area which is new to me!

 

[Roseyb]

Ah, that's a big upheaval for you. You definitely don't sound selfish and please try not to feel guilty. I don't live with my mother in law who is still waiting for a memory clinic referral. At least she is compliant at the moment and recognises me but she does drive me up the wall with constant repetition when I visit. I'm glad to be able to come away but then I'm 'carer' at my own home for my autistic husband too!
I moved home some distance to live with my husband and I was grateful for new connections in carers groups. I wonder if you have explored that kind of thing? I try to have something each day just for me to relax or let off steam or whatever else I might need. I've been to an afternoon tea today, it's autism group tomorrow and I need to think of something for this Friday.

Thank you, some good advice there- we are living a little while out of the town at the moment so I’ve been finding it hard to get it and leave my husband hers, he panics and runs me up every 10 minutes! I’ll try to find what groups are around!

 

[Roseyb]

Ah yes, day centres and memory cafes etc sound good. There were people with dementia at my tea dance today, disco dancing! But it's so important to have time away from caring. My husband manages to work and has solitary hobbies so can be quite autonomous, giving me time to recharge my batteries, though other times he follows me round the house wanting attention.

Yes, I think when the weather is better, he we’ll be able to potter around the garden, he doesn’t seem able to keep up with any other hobbies he used to have

 

[sheepfield]

My local carers centre can organise transport, home visits, someone to spend time with your loved one while you go out to carers services etc. I haven't needed those things but they might be available in your area too.

 

[Roseyb]

My local carers centre can organise transport, home visits, someone to spend time with your loved one while you go out to carers services etc. I haven't needed those things but they might be available in your area too.

That’s well worth looking into, thanks

 

[sheepfield]

It's amazing what you don't think of that could be out there to help. My mother in law has dual sensory loss as well as everything else and you can get vibrating pillows as fire alarms! Who knew?

 

[2ndAlto]

Hello @Roseyb. I found this advice very helpful https://www.alzsd.org/wp-content/uploads/2017/11/COMMUNICATION-Compassionate-Communication.pdf
but I admit I don't always follow the advice, sometimes it just gets too hard.