Planning for the next 6 months - Advice Please

[Donkeyshere]

Hi My m-in-law who lives in an annex with myself and hubby, is going to be 90 this year and was diagnosed with Alzheimers over 3 years ago. Up till Xmas she was quite able to do most things but the last 6 months she has deteriorated. I do most things for her housework, cooking etc, doctors appts, shopping etc. Just recently she has started to not want to go out for shopping etc as she says she feels stupid. Today she was nearly in tears when we went shopping as she cannot remember what she usually gets, I check her cupboards before we leave but she is getting quite anxious going shopping to the point that recently she has started to say she is unwell to go shopping then to her best friend once a week. However later on in the day she is fine! My husband does not work so is at home for her but he finds it difficult and gets frustrated and she is still lucid alot of the time (though not so much these days) just getting alot more forgetful and on repeat and started to do unusual things and less able to look after herself in many ways. I have seen a more marked change since Christmas. Sorry re posted on a different forum not sure how to delete it on this one!


I work full time but we are lucky enough that as we now have a carers allowance from our local government (we are in Channel Islands) that I can consider dropping my hours and be home at about 2.30 instead of 5.30. I am wondering though, do you think its necessary at the moment, I'm in two minds whilst I'm happy to change my hours but at the moment I do most things anyway with her already in the time I have. Or should I wait about 6 months till its really needed. My hubby and I have not managed to get a holiday together this year as she was adamant she was not having carers/respite care so we have had to take separate holidays but I think that next year it will be different if she is worse and will not be given a choice! So basically just a bit of advice what would people recommend - reduce my hours now or leave it a bit.?

 

[Sirena]

Dementia is completely unpredictable, so you can't really plan for it. Over the next 6 months your MIL may deteriorate gradually or suddenly or not at all. You are best placed to know if she needs more time from you now. How does she spend her time, does she need constant attention or is she okay with your husband working nearby? Bear in mind that even though she is deteriorating, she could live for many years. Edit - just realised you said your husband is not working. In that case, why would you drop your hours, he is present and available to help his mother.

It sounds as if the reason she says she is unwell to avoid shopping/meeting someone is because she no longer feels able to cope with it and wants to stay in her 'safe place' at home. For a while if it used to work okay when you did all the memory-work and sorted out what she needed, but now she feels lost in what is to her a busy and confusing store environment. There does come a point where their world shrinks to just the immediate environment and they are fearful in other places. If that's the case, let her know it's fine to stay home.

Re respite/holiday plans, if you wait for a person with dementia to agree, you will wait forever - you will need to just go ahead and arrange it without involving her.

 

[Beate]

Get a Carers and needs assessment from Social Services! Even if you had one before, you can ask for a new one if circumstances change, like a deterioration. Instead of you dropping your hours, a better idea would be a Day Centre which she could attend so you can work. No offence to your husband, but why should you drop your hours while he is at home unemployed and could step up more? And yes, get respite and carers in and give her no choice, or it will never happen. You have to think of yourselves and hubby too. That doesn't mean you don't love her, but you can't effectively look after her if you are exhausted, miserable and irritated all the time.

If going shopping makes her anxious, don't force her. Make a list of what she needs and get it with your own shopping. Or better, tell hubby.

 

[Rosettastone57]

Hi My m-in-law who lives in an annex with myself and hubby, is going to be 90 this year and was diagnosed with Alzheimers over 3 years ago. Up till Xmas she was quite able to do most things but the last 6 months she has deteriorated. I do most things for her housework, cooking etc, doctors appts, shopping etc. Just recently she has started to not want to go out for shopping etc as she says she feels stupid. Today she was nearly in tears when we went shopping as she cannot remember what she usually gets, I check her cupboards before we leave but she is getting quite anxious going shopping to the point that recently she has started to say she is unwell to go shopping then to her best friend once a week. However later on in the day she is fine! My husband does not work so is at home for her but he finds it difficult and gets frustrated and she is still lucid alot of the time (though not so much these days) just getting alot more forgetful and on repeat and started to do unusual things and less able to look after herself in many ways. I have seen a more marked change since Christmas. Sorry re posted on a different forum not sure how to delete it on this one!


I work full time but we are lucky enough that as we now have a carers allowance from our local government (we are in Channel Islands) that I can consider dropping my hours and be home at about 2.30 instead of 5.30. I am wondering though, do you think its necessary at the moment, I'm in two minds whilst I'm happy to change my hours but at the moment I do most things anyway with her already in the time I have. Or should I wait about 6 months till its really needed. My hubby and I have not managed to get a holiday together this year as she was adamant she was not having carers/respite care so we have had to take separate holidays but I think that next year it will be different if she is worse and will not be given a choice! So basically just a bit of advice what would people recommend - reduce my hours now or leave it a bit.?

If you wait for a person with dementia to agree with you or see your point of view then you will wait forever. Your mother in law may well say she's not having respite but her default answer is always going to be no. Personally I wouldn't wait six months and why is it this long? As others have said ask for an assessment and sort out carers now if possible. There may be day centres or a sitting service you can access to keep her occupied . I gave up a long time ago getting a list of shopping from my mother-in-law, I just got myself what was needed . Don't discuss things with her,just organise it. It'll come to a point where you are going to take over more and more and you'll need all the help you can get

 

[Donkeyshere]

Dementia is completely unpredictable, so you can't really plan for it. Over the next 6 months your MIL may deteriorate gradually or suddenly or not at all. You are best placed to know if she needs more time from you now. How does she spend her time, does she need constant attention or is she okay with your husband working nearby? Bear in mind that even though she is deteriorating, she could live for many years. Edit - just realised you said your husband is not working. In that case, why would you drop your hours, he is present and available to help his mother.

It sounds as if the reason she says she is unwell to avoid shopping/meeting someone is because she no longer feels able to cope with it and wants to stay in her 'safe place' at home. For a while if it used to work okay when you did all the memory-work and sorted out what she needed, but now she feels lost in what is to her a busy and confusing store environment. There does come a point where their world shrinks to just the immediate environment and they are fearful in other places. If that's the case, let her know it's fine to stay home.

Re respite/holiday plans, if you wait for a person with dementia to agree, you will wait forever - you will need to just go ahead and arrange it without involving her.

 

[Donkeyshere]

Hi I understand that people may think my husband should be ok with her and indeed "step up" but there are reasons which I will not go into why he is not able to do more and will struggle going forward on his own (he is retired not unemployed). Agreed he is coping at the moment but maybe not do so well down the line a little. Which is why I am considering my hours and a little planning.

We are not part of the UK so our care system is a little different as are our overstretched social services (like alot of the world these days!) I have tried day care once which went down like a lead balloon!

Agree with the safe place now being home and we are lucky that she can live with us. Yes I think it will be respite care next year no questions! I have been hesitant though I must admit about thinking of getting a sitter/carer but I will contact the local Alzheimers and have a chat with them - like you all say we need to look after ourselves as well.

Thanks all

 

[anxious annie]

Hi,
I would think that getting a carer/ sitter for your MIL may be better than you reducing your hours, as this would be supporting her, and also your husband, whilst you could carry on at work knowing they were OK. Reducing hours at work could affect you more in the future re your own pension/prospects.