Feeling overwhelmed

My husband had increasingly severe dementia for five years and I looked after him at home until I could no longer cope with physically lifting him, so I do understand what you are going through. Someone once described this illness as a long, slow bereavement and that is just what it is. The only help I had was with his daily shower, other than that I just coped. Family lived a long way away.

Practical word of advice. Do make sure you have a Power of Attorney which will make life so much easier when anyone has reached the stage when they are mentally incapable of managing their own affairs, plus giving you a right to resolve any medical issues.

So sorry to read about your situation.
I have no experience of this Illness but did care for my husband with cancer and know some of how you feel.

Get as much support as you can, look after you and know that complete Strangers like myself are touched by your story and care very much.

If ever you need a chat just message me.

That is such a sad situation to be in Nanna58 I sympathise with you.
A word of caution here as others have said, you love your mother and your husband but you can't look after both of them without help. Don't take on too many responsibilities, look at getting support where you can, Admiral Nurses, Alzheimer's groups, care agencies etc. There will be times when you have to compromise but your health is important as well. Ask your family to help so you can have some free time, its necessary to recharge your batteries . Best wishes from me as well

So sorry to hear what you are going through.

www.dementiafriends.org.uk/

So sorry to hear you news Nana58. My late husband had Posterior Cortical Atrophy, sometimes called the 'visual variant' of Alzheimer's, because it starts with vision and coordination, but eventually becomes similar to AD and shares the same cellular pathology. He was only 57 when he started to show signs, 63 when formally diagnosed, and lived for a further 9 years. The realisation and diagnosis are really dreadful, and under current circumstances, you may not have recourse to all the sources of help otherwise available. You are looking for advice, so here goes: try to remember that times will not always be as grim as they are now. There will be a lot of living, laughter and joy to come, together with the inevitable difficult times and sadness. Although you are really hurting now, most probably soon you will feel less sad and will start to focus on the practical, and that helps a lot! Most urgently, get your legal ducks in a row. Sort out Lasting Powers of Attorney for Health and Welfare, and Property and Affairs. You can do these online through the Office of the Public Guardian, but quite frankly, there are pitfalls and it's worth paying a solicitor who is experienced in 'Affairs of the Elderly' (look up sfe.legal); it is likely that in these early stages, your husband will be able to sign the forms because he understands in principle what he is doing, even if he can't remember details. Get them registered with the Office of the Public Guardian straight away. Your husband will be able to make his own decisions while he is able, but when he can't, you can act for him. If you don't do this, you can find that decisions are taken out of your hands and you may have to pay high fees for the OPG to do it. You might want to get yours done at the same time if you have children or a trusted relative or friend to be your Attorney. You and he might also want to draw up an Advance Decision which is a legal form stating which medical treatments you do or dot want at the end of life. You can get the form on www.compassionindying.org.uk - once you've dealt with those, you can get on living. Is the house "dementia friendly"? The Alzheimer's Society has lots of downloadable fact sheets on this and many other practical aspects of making life easier. You can also find out local sources of support from alzheimers.org.uk by inputting your postcode in the "Find support near you" section. Stay connected with friends and keep active (I know it's difficult at the moment). The Dementia Friends 45 minute information session is available online during the lockdown (dementia friends.org.uk). It will give you more information, possibly about things you haven't thought about, and it does cover the positive - what you CAN do as well as aspects of impairment. One other thing I would say is, take all the advice and help you can, and don't make any promises to yourself or your husband to keep him at home all the time: you will need respite care, and he may need full time professional care in the late stages, so being realistic is a good start point. Good luck - as someone said to me: "Head up, shoulders straight and breathe." You may not feel you can do this, but you can!

Message withdrawn at poster's request.

Nanna58 I feel for you in your awful situation. I have no advice except to try to make at least a little time for yourself.
I hope you are in good health and able to cope with the demands thrust on you. Keep writing on Gransnet whenever you need a boost. ??

My profound sympathies to you in the situation tat you find yourself in. No wonder you feel overwhelmed. I hope you find all the help you need. There is some very good advice already given on where to find it. I hope you have other family to help you and feel that you can ask them for support. Whatever you are offered, please take it and don't feel guilty that you need it.
My virtual hugs along with everyone else. I hope you come back on here and let us know how you are doing. Very best wishes to you.

Nothing to add but just to say sorry to hear your news ?

My heart goes out to you, you must be feeling so overwhelmed at the minute. Get on to your doctor and ask for all the help that you are entitled to. I had to care for my uncle, as he had no family, with dementia and some days it was hard. Most importantly take care of yourself, please get some help so that enables you to do that. Big hugs x

I am so sorry to hear your news Nanna. I looked after my husband for 6 years until I could not cope and he went into care. Luckily it was before covid and I used to go shopping and to church with him and even on a couple of holidays before he became frankly unmanageable. It is a slow disease and my friend had it for 10 years. I never asked for help and nobody offered any. Things are better in that respect now. You are worse off than I was, because you have 2 to take care of. Do you have family who could help with your mother?

Hi, sorry to hear your about your situation. You will have to prioritise your own health and needs to continue looking after your Husband and Mum. You must rest when they rest, take all help offered to you from Family & Friends...even if it is for you to have a couple of hours break from it all...take it. Your Mum I guess will be further on in her stage of Alzheimers than your husband. So I would assess yur Mums situation first and look at all her care needs & support. If you have brothers or sisters ask for more help & support from them. Whilst doing apply for DLA and Carers Allowance for yourself to help with your husbands care....if you have children ask them to help with the form filling for your entitlements and look to see if there are other health problems that need to be looked at regarding your husband...eg Glasses if he wears them...is his eyesight checks up to date, his earing...does he need an earing test? Both of these will help with Communication. Keeping him busy doing the things he likes to do will help with his confidence and reassurance is key. Again, if you have Children they can help alot with this and take some of this off your hands. Dont ignore your own health...keep on top of all your own appointments. Now breath... none of the above has to be done straight away. In your own time adress each when you are ready. Give yourself the time for everything to sink in...the day will come when you will feel ready to tackle and prioritise your to do list. But the key is to take all help offered to you...you are not super human...you will do your best. You are an Earth Angel and remember both your Mum & Husband are lucky to have you in their corner...God sends people what they can cope with and you my friend will do your best and your best will be more than good enough. xx

Very sorry to hear such sad news, you must really be totally overwhelmed by everything ahead of you. I haven't got any experience of what you're going through but didn't want to read your sad post without expressing sympathy for you and wishing you well for the future. I do hope you get some good advice from other people on here and lots of help. Take care.

I'm so sorry two people you love both have dementia. Where is your mother? Is she still in her own home? if she is perhaps she will now need more care coming in so that you can concentrate on the welfare of yourself and your husband. It seems he is in the early stages and is aware that he has dementia. Perhaps you can start routines that you would intend to carry on through the illness and then as it progresses can delegate to a carer. There are lots of books and I think you need to check which would be most helpful to you in your situation.

From what I have read, the carer tries to help the person not get anxious, and must have a fool proof method of being able to leave the person and then return without the person getting upset.

Also it is a good idea to develop and environment with suitable visual prompts i.e. wall clock with date and day etc, and tablet taking alerts etc.

the person usually needs a garden, with no hazards, where they can go out freely as later on it is not desirable that they go through the front door into the street.

Hopefully you can get some help with taking one step at a time. I am so sorry you have so sad and demanding a role to carry. Hugs.

Here in Fife, we have Fife Carers who are a font of knowledge, is there something like that near you? Please ensure you are receiving all benefits eg Attendance Allowance fir both your parents and Carers Allowance for yourself. Be kind to yourself and don’t be afraid to ask for help, we looked after my late inlaws and it was really hard going.

So sorry to hear about your mum and husband . Heartbreaking .I can only reinforce all the comments and advice given here .Your well being and health are a priority so please look after yourself and accept all the help you re offered.You can offload onto us on here please keep us posted .
Big hugs xxx

A hug and a prayer is winging it’s way to you from me ?

Like everyone else I send you hugs. My advice ,like many others, is get all the help you can. You might not feel as though you need it yet but it will be in place for when you do. Also, see if there are any day centres available. My mum went to one just one day a week and she enjoyed it, they had her cooking and singing along with old songs etc. She had a good day and I had chance to have some chill time . Good luck x

I'm so sorry that you are having to cope with this. Please get in touch with any organisation that can offer help. Crossroads carers are great, also WRVS., or as they are now known RVS. Please be happy to accept all the help you can get. Its too hard for you to have to bear the burden alone.

Lots of good advice on here. I know a little of what it’s like as DH and I cared for my MIL. It was a tough time but I found as soon as one professional body was involved they introduced others who not only physically helped with her care but pointed us in the direction of financial help as well. I wish you well it’s daunting I know especially having to look after your DM and DH but please don’t neglect looking after yourself or asking for help as hard as that is during this dreadful pandemic.

I am so sorry about your OH's diagnosis and also that he is at the stage where he is aware of this and what it might mean for both of you in the future. Such a very hard situation.

I was in that same position with my OH who had PD and, as a doctor, knew only too well what the future might hold in the long term. When it came to it, he was too locked up in his paranoia to worry about the effects on me, so he was spared that worry.

I do think it is too much for you to look after both your mother and your OH (when care becomes appropriate). I also think you should contact your local SSD to look at care options for your mother; and seek support for you and OH from the organisations that have been outlined above.

Above all else you MUST build in care and support for YOU that allows you to do some of the things that you enjoy. My lengthy stint of caring for my OH was pre-covid so I was able to get out and about and do things that helped me to stay sane - I organised a sitter to be with my OH whilst I did those, and as the illness progressed a carer. It was an absolute priority.

I'm so sorry. Though you may not be Wiltshire of course there is a lot of helpful advice for you on this site and you should hopefully be be able to source then what is available in your area
carersupportwiltshire.co.uk/

Nana58, I wish I could help you. I agree, look after yourself.

You must be feeling very overwhelmed right now. i only have experience of caring for my late husband after a stroke, and can't imagine being in your situation. It must be awful for your DH too.
I hope that you will get all the help possible. Thoughts and prayers are with you all.

Can you get carers in to help with either? It would take the burden from you a little. Look for any support groups you can (at this time online). Speak to your GP and ask what support is available for you