I’m new here but I’ve been caring for my wife for a few years. So far my caring duties are mainly domestic and have excluded her personal care as she is still mobile, just, and can shower, etc. herself.
However, her condition is progressing and she will eventually become bed bound.
We don’t discuss the future but i know she doesn’t want to go into a carehome. That’s just as well because we would have to sell the house to pay for it.
We also have a 38 year old son living with us and he has his own disabilities. Again, he takes care of himself but is relying on me for medical visits.
My own health is not good
I feel i should be planning for the future but don’t know how or where to start.
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Hi Stephen, welcome to the forum.
Can I start with the financial side of things? How old is your wife? Is she getting PIP or Attendance Allowance?
Google “Charging for Care” and look at the government site. Ideally print it off and highlight the most relevant bits. Especially “Property Disregards”. The house will NOT have to be sold to pay for care while you or your son are still living there.
Also read up about free NHS Care with Continuing Healthcare - but it’s a bit of a postcode lottery I’m afraid.
Is your wife mentally OK? If not, she might qualify for exemption from Council Tax.
What will happen to your son when you and your wife are no longer alive? Not nice to think about, but absolutely essential.
Have you all sorted out Power of Attorney? Made wills?
I’m gradually plodding through all this at the moment.
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Hi @Quintus Welcome aboard. Worrying about the future is something that affects us all - even if we try to ignore it, the worry is there.
Best to deal with it. The Carers UK helpline can give you advice about some of the help that may be available, and more importantly the current rules on care costs. Contact them on advice@carersuk.org - perhaps with a little more detail about your situation to begin with.
On a separate note: I suggest you change your username to something that doesn’t have your surname in it - so that you can remain anonymous.
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Thank you.
How do i change my username?
It should be possible by clicking on your avatar (the big pink S) on the top right of your screen. A drop down menu will show, with symbols on the right hand side. The bottom one is your profile icon. Click on that, and then preferences. Your username should show with a pencil symbol next to it. Click on that and you can change your username. If that doesn’t work, send a message to me, Melly1 or susieq: we can change it for you.
I’m using my phone and can’t edit my username.
Could you change it to: Quintus for me please?
Hi, I have tried to change your username but it seems moderators don’t have the necessary permissions. I have alerted Carers Uk admin so they can do it at their end.
Thank you bowlingbun. I believe we have the benefits covered as I have been using Benefits & Work website which provides excellent advice. I’ll follow-up your leads on the house.
That’s good. Now think about making the house as low maintenance as possible. You mentioned a shower, do you have a tumble dryer, dishwasher, slow cooker, food processor. I’m not suggesting you need them all now, but consider if any of them would make your life easier, and whether you could find room. Then think about the garden. After I was disabled I did away with all my borders, full of plants lovingly collected over 30 years, really sad, but now it’s easy to cut and always look tidy. We also increased the size of the patio so we can enjoy the sunshine. My mum had mountains of magazines and paper clutter. That was an ongoing issue!
Do you have a shed, garage or den/mancave?
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Melly1, You got it done, thank you
I have an office, 3rd bedroom too small for anything else, and the appliances you mention. Also, we took advantage of our council and, with a disabled facilities grant, converted part of the garage into a wet room and utility room.my wife takes pleasure from the garden and potters about it when she can. I just plant things were she directs but increasing the patio is something she wants. Practical steps like these are useful, and appreciated, but i really need advice on discussing what we should do about the inevitable future. I dont want to upset her but feel we should look at our options, whatever they are. The last time i tried she was adamant that a nursing home was not an option and she said if i were to go first she’d follow.
Seems my username has reverted to the original
Once your name issue has been resolved, so you can post anonymously, maybe you could share a bit more info with us? Does your wife have a terminal diagnosis? Or are you more concerned about when one of you dies before the other?
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@Melly1 has reported this to the admin team. Hopefully they can find a fix.
I’m a big fan of planning for emergencies. When I worked at a carers’ centre I used to run sessions that covered a variety of topics - from the small stuff to the bigger worries. Depending on what came up in the session (partly it was directed by the carers taking part), we could cover heart attack and stroke, hospital “go” bags, keeping a few cooked meals in the freezer in case of carer illness, Power of Attorney and Wills. If there was interest in the latter two, I used to bring an expert in for a follow up session.
One of the hardest things carers have to face is discussing these issues with the person they care for, especially if their condition is life limiting or terminal.
In your situation, your wife has made it clear that she doesn’t want to go in a care home. That is understandable, and for preference it’s something most of us would avoid. But there are other options, such as having care workers coming into the home. And, conversely, while your wife has rights to decide how her care is delivered, you also have the right to say “I won’t do that.” Or any of it.
It’s not cruel to discuss what you describe as the inevitable future. It’s practical and will reduce the worrying you’re both doing, but avoiding. Being ready for what is to come reduces stress - and stress is a factor in accelerating most conditions. So planning for the future should actually delay its coming.
Start with the small stuff: if hospitalisations are a regular prospect, agree the contents of a hospital “go” bag that can be kept in a place close to your wife’s medication store until needed - a few clothes, nightclothes, cash, phone charger, maybe a book? Or make sure there are books on the phone? On the day, bung in the meds on your way out. As her mobility is increasingly affected, having a fire escape plan is a good idea. And, as you get more used to planning ahead, you can introduce the tougher topics, like advance medical decisions, etc.
You both should consider Power of Attorney for each other. It’s cheaper, easier, and less bureaucratic than applying to the Court of Protection for deputyship after your loved one has lost capacity.
The most important one is fairly urgent: at what point do you have care workers coming in to take the load off you? What would make your situation sustainable for longer?
Something that might help: if your wife told a social worker that she’d rather die than go into a care home - and would find a way (which is basically what you’ve said) - then it’s highly unlikely they would try to move her. They’d have to find a way to keep her at home.
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@Charlesh47 An amazingly detailed and well laid out response as always.
@Quintus After my husband had his stroke 2 years ago, we were sitting having coffee a few days after he returned from hospital and at the same moment we said ‘We need to discuss Power of Attorney’. That was a pivotal moment for us as it meant we could suddenly discuss that and a host of other matters in the open without worrying it sounded like ‘gloom and doom’.
P.O.A. was one of the best things we did. It has meant I can deal with any matters for Graham that I need to. Just remember there are two types now - Health & Welfare and Finance & Property. I would recommend getting both even though it is twice the cost. The forms are available online and they look complicated but actually are fairly straightforward. you DO NOT need a solicitor to do it, unless you really feel ‘all at sea’. They will charge a lot for just filling out a form! We’ve encountered an issue where one hospital refuses to automatically accept the POA as they claim G ‘may still have Capacity’ - although in his case, his ability to discuss things and make decisions varies depending how tired he is and changes from day to day! To cover this we now have a letter he has signed stating he gives his Consent to me making decisions and having access to all his records as necessary!
So far, he has declined to make a Will, saying everything will go to me. That’s fine til I ‘shuffle off’ at the same time in an accident or drop down before him anyway. It’s a small hurdle to cross yet.
I am quietly planning for the day when we need to downsize from our large house and for the problems which will arise if/as he becomes less mobile. He has joked from time to time ‘oh just stick me in a Home and bugger off and enjoy yourself’ but then he’s also said he would hate to go into one unless absolutely necessary.
Lots of decisions have to be made and, as Charles says, far better to have discussions while you are both in a ‘sensible’ state of mind than when it is forced on you. Can you perhaps find some time when you are both relaxed and in ‘a happy place’ to open a discussion? You don’t have to do everything at once, take baby steps as once you start you may find thing naturally progress. Perhaps make a list of things you feel you need to talk about - but don’t sit there with it like an Agenda, as that can be intimidating for both of you. If your wife wants to help you make things easier, you could perhaps start by saying ‘I was thinking it might make things easier if we BOTH had POA for each other - that way we’re prepared if anything happened to either of us’. If you need to make small changes around the house, start early while you can plan and do things bit by bit, rather than having to make sudden changes.
It’s a lot to think about, but well done for starting to get things clearer in your own mind. Advice and suggestions are available here from lots of people in similar situations to you, so don’t feel you are alone.
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@Quintus
My lovely late husband suffered strokes vascular dementia and other health issues. Before his illness we both felt we were sensible in many ways. One thing we discussed was do not resuscitate as he had witnessed it many times to do with his work. His words were don’t let them to that to me! One thing that never thought about was power of attorney. So when the time came that it was needed, it was too late. He lost capacity. So I had to go down the court of protection route. It’s very intrusive and costly. Paying them each year to check I wasn’t misusing money! Power of attorney is more important, both health and financial, than many people realise.
Yes I noticed that last night. I emailed them again then too.
I meant to add - we both have Advance Decision Notices filed with our GP - after discussion with him - so we are covered for that as well. Last time G had to go into hospital he mentioned it and we BOTH discussed it with the Ward Staff and doctors so they knew where we were with it all. Talking in advance means it’s SO much easier than having to deal at a time when emotions are rampant.
Hi and welcome to the forum.
Lots of great advice there from everyone. I can only add that I am also advocating being prepared from the earliest possible moment.
My Husband and I had both noticed his PD symptoms independently, but neither of us felt we could bring the subject up and have a proper chat about things. He is a hypochondriac who, strangely, has an aversion to doctors and actually didn’t want to know what was going wrong with him. I like to know everything so that I can be prepared for what’s coming over the horizon, nevertheless it was four years down the line before I initiated a sit-down talk with him over a cuppa. I wish I’d done it earlier, because four years of uncertainty worries and anxieties just came tumbling out of us both. Now we talk about all the difficult stuff, just lately it’s been funeral arrangements, hopefully a long way off, but just so we each know the other’s wishes.
Anyway, I just wanted to say that while the thought of it might feel scary, having a chat about how you both would like to go forward can only be a good thing in the long run.
Take care - Teddy
When my husband was about 57 we read an article about a lorry enthusiast who would take someone on their “final journey” on their 4 wheel flat bed lorry. I mentioned it to my husband, just out of interest. (I ran a national lorry club at the time). He said “Don’t you dare do that to me when my time comes”. He also said he didn’t want any fuss, or any steam engines (we’d been part of the steam movement for over 40 years). I am so very glad we had that conversation, because less than a year later he died in his sleep from a massive heart attack. Over 200 attended the service from Newcastle to Cornwall, and many said it wasn’t what they were expecting. We explained that it was exactly what he wanted. No fuss, no frills, exactly as he had wanted.
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