I’m new to asking for help and support as I’ve always been the one others go to but … well… I expect you all know what I mean.
My husband had severe pneumonia, was in hospital for 2 months and took 6 months or so to recover. Then after 3 months he had 2 strokes and another 6 months later. That was a year ago. He’s now waiting to hear whether he has Vascular Dementia or not. (he’s really been through it!)
However, I’m starting to feel overwhelmed by it all. He’s fine with other people and he sees others several times a week but when it’s just us (no family) he is totally different. One minute he’s OK and then if I say anything remotely negative he starts to cry, well, he makes crying noises but rarely has tears.
I go to a small support group once a month but, unfortunately, one lady uses me as a shoulder to cry on, not what I need, but it’s difficult to avoid her.
I don’t know what I expect from this rant but I’m hoping someone can just give me a lift and maybe some advice.
Hello and welcome.
Gosh poor hubby has been through a bad time, but so have you. Witnessing something so horrid happening to someone dear to you with all the fear, worry and upset it brings is different, but just as traumatic as being the one it is happening to.
What are your circumstances, in that do you have family close by? Any support other than that once a month? Do you get some time away from your caring role apart from that one outing? Any help coming in?
How old are you both?
Sorry, for all the questions. Not just being nosy, but members can help, or point you towards help if we understand more.
That imminent diagnosis is very scary to wait for. When will you hear? Hubby is probably very anxious and possibly depressed? Perhaps a word with the doctors?
Remember that is essential that you look after yourself. You are important too. You need ‘time out breaks’. Most certainly you need to have a team to call on, especially if that diagnosis is bad news. Step off that ‘I’m the capable one’ platform and accept any help you can get. What are you finding most difficult at the moment?
Not sure what to suggest about the lady at the group. Do you have to sit next to her? Kind but firm, ‘I’ve got my own problems, can we talk about something else’. ?
Please keep posting and ask about anything and everything. There are people here who have gone through what you may be facing and the forum is overflowing with advice, hints and tips and sympathy. There’s also Roll call and general chat threads to ‘talk’ about something else. Cyber company.
Hi Shirley, welcome to the forum.
Can I ask a few questions, so that we can make the most appropriate suggestions?
How old are you and your husband?
Do you own or rent your house?
Have over £46,000 in savings between you -Yes/No is sufficient. This is the magic figure. Above this amount you are expected to pay for care, below it, Social Services will pay for some or all of it.
Are you claiming Attendance Allowance?
Aware that if you have “severe mental impairment” you are EXEMPT from Council Tax?
I know that some Carers Groups are good, but you might be better off in the “real world” when you get “time off”. Does your husband mind you going out alone?
I’ve have been through very similar experiences. Sadly my husband was diagnosed with vascular dementia after several mini strokes then a more major one. Plus other health issues.
However, I want to explain that I went to a group meeting just once, and just couldn’t hack it. I took the worries of everyone else home with me, and I had enough on my plate! I did have one to one advice which was very helpful. So as our lovely Elaine suggests you either tell this poor lady that you understand, but can’t take her worries on too. Wouldn’t she accept you going for a coffee somewhere, on the understanding you do not discuss relatives health but have sort of " girlie chats"? I did this with a couple of people I met at my husband’s nursing home. It’s not easy but worth a try. Proved to be light relief.
Have you been in touch with the stroke association? They can be very helpful too.
When your husband makes the crying sounds,try to walk away. Tell him you will keep him company in a few minutes when he has calmed down. Believe me I do not suggest these things lightly, but I realised that I was going to completely break,( nearly did) and I needed to look after myself, in order to do the best for my husband who I loved dearly.
Please stay with the forum, you will find it very supportive and non judgemental.
Shirley there will be a group coordinator. Speak with the organisation about the individual and ask for help in dealing with the situation. Sometimes coordinators can remind group participants. The purpose of such groups and individuals expectations.
You should also be able to speak to someone within the organisation on a one to one basis. A few weeks gap from that lady may just be enough to discourage her.
A big thank you to all of you who answered my ranting… I found it very uplifting and reassuring.
In answer to all the questions (no I didn’t mind them!) we are both retired, in our own home and able to fund occasional help when we need it. And last week I found a useful site, “Close to Hand”, where there are helpers and I asked for someone to do a bit of light gardening and chat to hubby, She came the day after I got in touch with her and they got on like a house on fire! We do have Attendance Allowance and that pays for it. We also recently found out about the Council tax and received a cheque on Friday!!
No we don’t have children, but I have a sister, about 45mins away, and friends about an hour away. Both I speak to regularly.
We go out once a month to the Seniors Cinema and also to a tea and chat social group. Ian (hubby) already goes to the Stroke twice a month and that’s “my” time when I can go shopping.
You can see we’re both trying to make a big effort, and I have no problem with not getting a lot of time on my own, it’s just the frustration of his quickly changing moods from adult to toddler that gets me down. I know I’m a lot better off than many other people but, sometimes, you just have to have an outsiders ear to get you back to being someone in your own right!
I WILL be taking Elaine’s advice about my lady who needs my shoulder to cry on when I meet her next week at the club.
We’ll be getting his diagnosis in October so maybe that will help in some way.
Once again, thanks everyone, no doubt you’ll be getting another rant soon!!!
Thank you for posting again and I must say that I found your post most encouraging, especially reading that you and hubby are working together to get through this time and make the very best of it. I don’t want to sound patronising and don’t intend to be, but ‘Well done’.
It seems that hubby has the ‘toddler’ episodes as you describe it, when only you are present. Do you think that it is an indication of how much he loves and trusts you because he can only ‘give in’ to what must be anguish, fear and apprehension when you are there.
From your point of view it must be very scary. It’s one thing to nurse someone through an illness or a broken limb perhaps when that person is still ‘themselves’ as you know them, speaking sense even if grumpy or a bit demanding, quite another when that person changes personality in front of you and you don’t recognise them or feel able to communicate as ‘normal’.
I remember walking out of Mum’s room in the Home (there for last few months) with tears running down my cheeks. The staff thought she had died or something but it was because she was talking nonsense and I couldn’t ‘reach’ my Mum. I learnt to cope with the strange things she said by changing the subject when I could and complying with her odd requests when there was no harm to it. (Had to drink out of a red cup for example, no other colour ‘worked’ ).
October seems a long time to wait. Is that usual? Someone might know. At least when you know for sure you can plan. Have you got POA in place?
Also, although you have found someone to help out a bit (great!) it may be worth making sure hubby is on the SS ‘radar’. Just in case you go down with ‘flu, or are otherwise incapacitated for a while. Plus they are a gateway to such helpful people as the Occupational therapist (free equipment ‘on loan’) and the continence nurse. (Maybe needed one day).
Do let us know how you manage with the needy lady. So sorry for her of course, but as Pet said, you can’t shoulder anyone else’s problems right now.
Oh, and rant away, as much as you like!
All the best
Shirley, we are happy to help, and aware that most people only find the forum when they are being severely tried by their caring role. No need to apologise, come back whenever you like.
Thank you for the supportive messages, it’s really good to know I’m not alone!
Today my husband went for a walk with a volunteer from My Guide, part of RNIB. Although we asked for help in October today was his 1st time, volunteers in short supply… and it was 1.3/4 hrs where I could do nothing. A bit of this and a bit of that was good!
We also found “Close to Hand” where, for a small hourly amount, people offer their help. So last week we had a bit of gardening help and hubby had a long chat with someone other than me. If they operate near you it might be worth searching them out.
I was told that, when the toddler episodes happen, just to walk away and not go back till they are over. I explained this to hubby and he fully understood that’s what I’ll do in future, so we are making progress.
Little steps forward seems to be the way forward, obvious I know but you don’t always realise the obvious.
Your support is really helping me look forward.