First time posting...where do I start?

[Annabelle23]

I am new to this! I am 53 my husband is 81 and was diagnosed with LBD last October. I am on a steep learning curve. My question amongst many is about starting additional care. He is on Rivastigmine and most of the time we cope very well. However when he is ill his condition deteriorates to the point that I am unable to go to work ( I work 3 days a week and I love my job!)and need to be at home. This is not all the time though. I don’t fully understand the way care works ( I know for definite we have to pay) Our local dementia support group offers 2 hours free respite per week, which OH has been reluctant to use. Should I get this in place even though he is ‘t keen. I feel it may be for selfish reasons - but then would I have access to emergency respite at times when he is ill???
Sorry for the long post...he has UTI at the moment and the whole extra support thing is worrying me. Our surgery has a lovely dementia support worker and I am fortunate to be able to talk to her but would welcome some advice.
Sorry for the long post!!

 

[canary]

Hi @Annabelle23 and welcome to DTP.

Unfortunately, most people with dementia are not keen on any form of additional care, but as you are working the care will become essential unless you are prepared to give up work in order to care for him, so its best to start early. Your husband may find that he enjoys the time, but even if he doesnt I would take it - it is not being selfish, it is for his own wellbeing.

The may well be other things locally, like day care that SS will know about. I would request a Needs Assessment from SS. You may not have to pay (at least not the full amount) it will depend on his income and savings (half of any joint savings) and your home will not be counted. You should get a financial assessment after a need has been identified.

 

[Grannie G]

Hello @Annabelle23 Welcome to Dementia Talking Point. [ DTP ]

I`m sorry about your husband`s diagnosis, especially because you still need to work. However terrible it is, it is easier for those of us who are retired.

It`s good you have a dementia support worker at your surgery. I didn`t have this in my time so I`m hopeful this will be standard in all surgeries.

I`d advise you to take all the help available. Your husband may not be happy about this I know, but is it possible you could make out the help is for you, rather than for him. It`s what I did to encourage my husband to accept strangers in the house helping rather than visiting.

I`m pleased you have found DTP. There is a wealth of experience here and I hope you`ll feel well supported during this very difficult time.

 

[maryjoan]

Hi and welcome to TP. You will find a lot of friends on here who have trodden the path before you and can assist.

My partner is only a couple of years older than me - but I have realised over the last 3 years that with this disease you need to get several 'things' in place for your own peace of mind - the first of course, is Power of Attorney.

But, in you case, your need seems to be for back up care. This is the stage I am at at the moment. My partner's children live about 250 miles away, and I have no 'plan B' - which I am sorting at the moment.

You NEED this in case you are suddenly ill, or have a different sort of emergency to deal with.

Please carry a Carers Card in your wallet - in case you are in an accident. It will alert others to the fact that your husband requires attention immediately.

I have found a care agency which works in several areas of the country. ( cannot recommend by name on here) but they have agreed in principle, to intermittent care - we are just setting it up - this will mean I can take short breaks to recharge my batteries. You will need breaks, or you may go under, which will leave husband adrift. You will probably find as the disease progresses you will be able to tell your husband what IS happening rather than him agreeing.

There is a lot to think about and that can be overwhelming - if you want to pm me please do.......

 

[Vic10]

I am retired and as yet haven’t sort help so I care for my OH alone. I appreciate this is probably the wrong decision in the long term. However, this means I can’t offer advise re care.
My message to you would be to continue to work as long as you can and don’t feel guilty about it. It is easy to only think of our OH when planning and adjusting to changes in circumstances but please remember there are two of you and both of you are important.
Take care of yourself and get the support you both need.

 

[Annabelle23]

Thank you all for taking time to comment and advise... it is very much appreciated. When he is recovered from this illness we will certainly look into the care aspect.

 

[Annabelle23]

Hi and welcome to TP. You will find a lot of friends on here who have trodden the path before you and can assist.

My partner is only a couple of years older than me - but I have realised over the last 3 years that with this disease you need to get several 'things' in place for your own peace of mind - the first of course, is Power of Attorney.

But, in you case, your need seems to be for back up care. This is the stage I am at at the moment. My partner's children live about 250 miles away, and I have no 'plan B' - which I am sorting at the moment.

You NEED this in case you are suddenly ill, or have a different sort of emergency to deal with.

Please carry a Carers Card in your wallet - in case you are in an accident. It will alert others to the fact that your husband requires attention immediately.

I have found a care agency which works in several areas of the country. ( cannot recommend by name on here) but they have agreed in principle, to intermittent care - we are just setting it up - this will mean I can take short breaks to recharge my batteries. You will need breaks, or you may go under, which will leave husband adrift. You will probably find as the disease progresses you will be able to tell your husband what IS happening rather than him agreeing.

There is a lot to think about and that can be overwhelming - if you want to pm me please do.......

Thankyou Maryjoan... I hadn’t thought at all about me being ill or having an accident. I suppose the other’s needs become all consuming. I will look into having a carer’s card too... a good idea. P of A is in place but I need to look at back up care as I am on my own... no family etc.

 

[Herecomestrouble]

I am new to this! I am 53 my husband is 81 and was diagnosed with LBD last October. I am on a steep learning curve. My question amongst many is about starting additional care. He is on Rivastigmine and most of the time we cope very well. However when he is ill his condition deteriorates to the point that I am unable to go to work ( I work 3 days a week and I love my job!)and need to be at home. This is not all the time though. I don’t fully understand the way care works ( I know for definite we have to pay) Our local dementia support group offers 2 hours free respite per week, which OH has been reluctant to use. Should I get this in place even though he is ‘t keen. I feel it may be for selfish reasons - but then would I have access to emergency respite at times when he is ill???
Sorry for the long post...he has UTI at the moment and the whole extra support thing is worrying me. Our surgery has a lovely dementia support worker and I am fortunate to be able to talk to her but would welcome some advice.
Sorry for the long post!!

Hi there,
It sounds like our situations are pretty similar, esp in terms of age difference in relationship, and type of dementia though my OH ( other half)’s is Parkinson’s related.

I have reduced from full time work to two days a week and cover those two days by OH going to a day centre ( lists available from council) , but I also have an adult son at home which makes the world of difference. In this area some centres are open to all, some require referral by medical professional or social services. They are very much cheaper option than home care, and may be better from point of view of stimulation, but my OH wouldn’t agree. He goes because he has to. So far son has covered the one or two days when OH was not well enough to go, but I need something more reliable in place, and am now seriously considering a career break...my work is stressful and not what I would call enjoyable so nothing to lose except (!) the money, whereas it sounds like your work is worth holding onto for as long as possible. If I buy in care it costs more than I earn so in the absence of a positive experience at work it is a no brainier really.

I have seen adverts from local people offering home care, ( much cheaper than agencies) which could be absolutely fine if they have good references and get on well with the person being cared for. I tried one woman, who was ok but not right for my OH..

This might seem a bit way out but you could take a look at the online classified ads in The Lady magazine...people advertising for care and offering care, and all sorts of options from , as and when , to respite, to full time live in carer, so horses for courses. Would take a bit of time to get set up so worth looking into it all before the actual need arises.

Depends on what kind of care is needed...there are “ sitting services” , just being with someone, all the way up to full time nursing care . My OH cannot be left on his own but does not need much “care” except mornings and evenings and for meds/ food prep.

It has taken a while to accept that my needs matter too..even harder to put anything into practice to reflect that. At the moment my focus is on improving and maximising my OH’s quality of life such as it is. Which might sounds rather saintly, and could not be further from the truth in practice but I do try, as we all do. Part of that is about me having time off from him so that I am in a better state of mind and heart to deal with his needs.
Local Occupational Therapy services based at rehabilitation hospital ( mostly for stroke patients) run a variety of groups, e.g. games, art, swimming, singing, model railway club etc. Might be worth looking into what is available in your area. Quite a lot on offer too from Community Mental Health Team / Memory clinic which I have only just found out about

You could do worse than getting hold of a copy of A selfish pig’s guide to caring by Hugh Marriott. I found it in our local library recently and it is an absolute godsend. Down to earth, realistic, practical, wise, and funny.
Warm regards,
HCT

 

[Annabelle23]

Hi there,
It sounds like our situations are pretty similar, esp in terms of age difference in relationship, and type of dementia though my OH ( other half)’s is Parkinson’s related.

I have reduced from full time work to two days a week and cover those two days by OH going to a day centre ( lists available from council) , but I also have an adult son at home which makes the world of difference. In this area some centres are open to all, some require referral by medical professional or social services. They are very much cheaper option than home care, and may be better from point of view of stimulation, but my OH wouldn’t agree. He goes because he has to. So far son has covered the one or two days when OH was not well enough to go, but I need something more reliable in place, and am now seriously considering a career break...my work is stressful and not what I would call enjoyable so nothing to lose except (!) the money, whereas it sounds like your work is worth holding onto for as long as possible. If I buy in care it costs more than I earn so in the absence of a positive experience at work it is a no brainier really.

I have seen adverts from local people offering home care, ( much cheaper than agencies) which could be absolutely fine if they have good references and get on well with the person being cared for. I tried one woman, who was ok but not right for my OH..

This might seem a bit way out but you could take a look at the online classified ads in The Lady magazine...people advertising for care and offering care, and all sorts of options from , as and when , to respite, to full time live in carer, so horses for courses. Would take a bit of time to get set up so worth looking into it all before the actual need arises.

Depends on what kind of care is needed...there are “ sitting services” , just being with someone, all the way up to full time nursing care . My OH cannot be left on his own but does not need much “care” except mornings and evenings and for meds/ food prep.

It has taken a while to accept that my needs matter too..even harder to put anything into practice to reflect that. At the moment my focus is on improving and maximising my OH’s quality of life such as it is. Which might sounds rather saintly, and could not be further from the truth in practice but I do try, as we all do. Part of that is about me having time off from him so that I am in a better state of mind and heart to deal with his needs.
Local Occupational Therapy services based at rehabilitation hospital ( mostly for stroke patients) run a variety of groups, e.g. games, art, swimming, singing, model railway club etc. Might be worth looking into what is available in your area. Quite a lot on offer too from Community Mental Health Team / Memory clinic which I have only just found out about

You could do worse than getting hold of a copy of A selfish pig’s guide to caring by Hugh Marriott. I found it in our local library recently and it is an absolute godsend. Down to earth, realistic, practical, wise, and funny.
Warm regards,
HCT

What a great post HCT! So much info for me to think about. Thankyou so much for taking the time to reply. I have read the selfish pig book... it was great though my OH wasn’t too impressed!! We need to have some discussions together. I am lucky to have a dementia support worker to go to for advice too. It’s all just a bit scary !! Thanks again

 

[maryjoan]

Thankyou Maryjoan... I hadn’t thought at all about me being ill or having an accident. I suppose the other’s needs become all consuming. I will look into having a carer’s card too... a good idea. P of A is in place but I need to look at back up care as I am on my own... no family etc.

It was brought home to me one day when I was so exhausted, I went back to bed after seeing to his meds and breakfast. He sat in front of the TV and when carer came to deal with his medical needs, he did not even tell her that I was in bed. I thought then, I could have had a heart attack and died, and he would not tell anyone!!!

 

[Annabelle23]

It was brought home to me one day when I was so exhausted, I went back to bed after seeing to his meds and breakfast. He sat in front of the TV and when carer came to deal with his medical needs, he did not even tell her that I was in bed. I thought then, I could have had a heart attack and died, and he would not tell anyone!!!

I know I have to do something. Came back from choir last night to find he had a fall. He is fine but waited until 4am for an ambulance to help get him up! Think it is time for occupational health assessment, some kind of alarm system and someone to come in whilst I’m at work!

 

[maryjoan]

I know I have to do something. Came back from choir last night to find he had a fall. He is fine but waited until 4am for an ambulance to help get him up! Think it is time for occupational health assessment, some kind of alarm system and someone to come in whilst I’m at work![/QUOTE

Absolutely - if he is being left alone.3
Have you had a Carer's Assessment? This is just for you, and how you cope - you are allowed to request one.
When you have a moment, and feel mentally up to it, I think it would be a good idea to make three lists. One of what OH needs to keep him safe and happy, and another of what YOU need to help you keep working, and follow your interests, whilst knowing that he is safe and happy, and a third list of what you both need to happen in the event that the other is out of action.

These lists will overlap in some places, but will serve to help you plan clearly for what is happening - but do remember, how things can change, what works now,. might not work in 6 months, a year, etc - I am just learning that.

I said to my OH's children, who live 250 miles away, that no one gave me a handbook to tell me how to look after their Dad, I am learning as I go along.....

 

[Annabelle23]

Absolutely - if he is being left alone.3
Have you had a Carer's Assessment? This is just for you, and how you cope - you are allowed to request one.
When you have a moment, and feel mentally up to it, I think it would be a good idea to make three lists. One of what OH needs to keep him safe and happy, and another of what YOU need to help you keep working, and follow your interests, whilst knowing that he is safe and happy, and a third list of what you both need to happen in the event that the other is out of action.

These lists will overlap in some places, but will serve to help you plan clearly for what is happening - but do remember, how things can change, what works now,. might not work in 6 months, a year, etc - I am just learning that.

I said to my OH's children, who live 250 miles away, that no one gave me a handbook to tell me how to look after their Dad, I am learning as I go along.....

Thank you again Maryjoan. Three lists sounds a very good idea. I spoke to our dementia support worker this morning and she is referring us for some respite provided by our local dementia charity so that is a good place to start. I am going to ask for carer’s assessment and also assessment for OH. The replies on here are helping me to think about things more clearly ... thank you again.

 

[maryjoan]

Thank you again Maryjoan. Three lists sounds a very good idea. I spoke to our dementia support worker this morning and she is referring us for some respite provided by our local dementia charity so that is a good place to start. I am going to ask for carer’s assessment and also assessment for OH. The replies on here are helping me to think about things more clearly ... thank you again.

My pleasure I am sure! Good Luck - let us know how you get on- sounds promising to have respite, as we have not had any at all down here in Devon/

 

[Herecomestrouble]

I know I have to do something. Came back from choir last night to find he had a fall. He is fine but waited until 4am for an ambulance to help get him up! Think it is time for occupational health assessment, some kind of alarm system and someone to come in whilst I’m at work!

Hi again,
Just a thought...before you fork out on expensive alarms and spend ages on review sites trying to work out which one to get, ask OT or other professionals re what is available, or disability living centre. We were given ( not kidding), by social services or some such, a mat that goes by the bed so that if OH falls out or gets out of bed I would be alerted to the fact, and a chair pad which does the same thing. He doesn’t use them at the moment but that is another story.. of course you have to be in the vicinity.
Definitely worth finding out what is available from local services before paying out for same. It does take time and effort, there is no getting round that, but worth it n the end.
HCT x