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