Whose needs are more important?

[Pantsinthewash]

I could use some help in sorting out my conflicted feelings regarding this situation. A close member of my husband's family lives next door and has been very kind to me over the years. They are now frail and elderly and in need of support. I invite them for a few meals in the week and help with a bit of shopping and company. Because they are painfully lonely and isolated this person likes to come and sit in our garden, but sometimes I just want to be on my own, or for just my own family to be in the garden. I don't always want to feel obliged to sit and chat, etc. I would like to be able to come and go without feeling I am in a goldfish bowl, and being noticed by the relative, no matter how nice they are. My husband is an exceptionally kind individual, and trying to do the right thing by his close relative in providing support, but I can see he sometimes finds it a strain, and can get a bit impatient. There are a number of ailments and health problems the relative suffers from, but they don't seem to follow advice about taking enough pain relief etc to manage them, and we just keep having the same conversations that lead nowhere. Memory problems are now starting to surface and they need help keeping track of appointments and most decisions seem to require my husband's input or seal of approval. It's exhausting. I am unhappy that the elderly relative's needs are having quite an influence on how we live our lives. I want to do the right thing, give back kindness to someone who has been kind to me, but I am feeling suffocated by the current situation. We did have hopes of relocating, but feel trapped because feel we would be leaving the relative without support, especially as they are not keen on the idea of carers etc. I feel torn between wanting to support my husband, wanting to be kind to the relative, and wanting to have my own separate life and self-determination about where to live. The relative is a lovely person and would hate to be seen as a burden, but this is exactly what it happening, and I feel crap for feeling this way, especially towards someone who has been good to me. Can anyone else relate?

Awww sounds so complicated OP. Have you spoken to DH about it? How does he feel ?

Thank you for replying. My husband does understand, but hasn't really known how to approach it. At my suggestion he is going to start some gentle dialogue about the future with the relative, and what would happen if their need for support becomes greater than we can accommodate. I don't think this is something that has occurred to the relative, and in a way, they have almost been sleep walking into this situation without any forward planning or anticipation that this situation might not be workable long term.

I can definitely relate and I feel for you. You could be describing the situation with my mum. Although she's not as near as your relative she's still near enough and your experience really resonates with me. I'm afraid I don't have any real answers apart from trying to set some boundaries before it's too late as it's so easy to slip into patterns of behaviour that become normalised, and before you know it, you're not just sorting out the odd issue now and then, you're doing everything. It's also really difficult when there is an obvious cognitive decline but it's at the early stages. The very elderly can also be very unintentionally selfish as their world shrinks. I've just had an exhausting few days with my mother who, dealing with issues that if she's followed advice, wouldn't have occurred, then if she'd taken further advice early on wouldn't have turned into the major issues we've had over the past few days. Basically she falls ( more slips than anything) forgets to wear her red button, refuses to phone the doctor, the ambulance etc all she does is phone me. She can't see anything wrong with this as in her words, she knows I'll 'sort it all out for her and make it all go away'..... until the next time. Refuses to take any responsibility for her situation, won't move etc etc. We've had 7 years of this with one parent of in law. It's also awful as you then feel guilty as well. I'm trying to set boundaries now but I think that horse may have bolted and I'm shutting an empty stable door. You sound like you're doing a lot for your relative and a lovely person but you need to live your life and don't let this gradually consume yours. I hope you can find a balance.

@stellabluesky Thanks for your really thoughtful reply and for taking the time. Your situation sounds very difficult and frustrating. Do you have anyone you can share the load with or offload to a little?

Elderly people falling is really difficult. The call alarm usually calls the nearest relative as the first response. Calling an ambulance is a poor solution as they are not high priority, and the wait may be 8 hours or more, followed by another 4 hours plus wait to be seen in A&E. It isn't made easy for them not to call their relative!

Pants It's really difficult. It would be difficult for you to live with yourself as a nice person were you to accept the relative's support over the years, then reject them as soon as they needed support themselves. But you're entitled to a life of your own. Not easy when they live next door! Many of us survived because the elder lived too far away for them to just drop in at will.

Day to day, you need to delevop a bit of toughness. You are not obliged to chat. "Sorry I'm busy, I can't chat" followed up if necessary by responses that are grunts, "sorry I was busy with this, I didn't hear that". Decisions - of course they need input into decisions, especially if they used to have a partner to talk these things over with. But you don't have to keep repeating the same discussion "we talked about this week and I advised ..." and then just shut the discussion down.

Not being able to live where you wish goes a bit with having relationships. As soon as you have a partner, although opportunities may be greater with two incomes, you no longer have free choice about where to live, once you have children your options are constrained further. I think it's about trying to get a balance between duty (what is needed for you to respect yourself) and desire - finding the territory where you can provide support without resenting the person, and your relationship with them suffering. For me, that looks a target within reach now my father is in a nursing home.

I think you're right to begin approaching the question of future options. And I wonder, if money allows, if you could gently introduce a "companion", even if you have to start by pretending their a friend of yours. They don't want carers - could they tolerate a cleaner? My father referred to his carers as "the home help".

It's really hard getting old. You are surrounded by people wanting to "keep you safe", make you live as long as possible, while everything that makes life worth living is being taken away from you.

@Pantsinthewash I'm lucky in that my husband is really supportive and also she acts in a very different way if he comes with me!

@MereDintofPandiculation totally agree about falls. I was a nurse and have only recently retired from the NHS and actually managed a lot of the services I'm now dealing with although in a different hospital. Mind you, it's very different when it's your mum your dealing with, so difficult to detach yourself from all the emotions.

When I started nursing, the average life expectancy was mid 70s, now it's mid 80s and dealing with the very old,very frail in such numbers is an issue that services haven't caught up with. All my grandparents died in their mid 70s, none had dementia. MIL & dad died in their mid 80s, one had dementia, FIL in early 90s in care home with dementia, mum early 80s and clearly heading that way. So definitely try to future plan now, I've left it too late I think. I've had some conversations with mum about 'future proofing' her life particularly as she is adamant she will stay in her current home where she'll will be totally isolated once she can no longer drive - currently she only drives to the supermarket and GP but it's only a matter of time before that isn't feasible). None of these have that gone well. It's either obvious lip service eg says she'll use taxis for longer journeys if I'm not available to take her (I've tried to make myself a little less available) then says they're all booked, so I've taken to booking them as I can always book one for her! Strange that! Basically there are tears and tantrums no matter how I approach it.

She's not socially isolated, she has a set of friends that she speaks to daily and they manage to meet up one way or another weekly but they're all in the same stage of life but think they're fine and reinforce this with each other!

Although mum has had a few 'proper' falls which have needed NHS services we have a lot of calls and episodes where she's says she's fallen and when we get to her, she's fine and sitting in a chair! She has one chair that is too low for her and she struggles to get out of it and I have witnessed her sort of slipping out of it but is then able to lever up as it has low arms she can use to get up. It's an Art Deco style bucket chair that she absolutely refuses to get rid of. Don't know why, it's not particularly attractive and has no sentimental value! Yesterday was an example of this, frantic call that she'd fallen, didn't know where her red button was (I'm not down as the main contact unless she's changed it as we set it up when I was working and so not very available at short notice and paid more for them to send out their support team if rung) didn't want to call the doctor. I drove there took me 2 hours as wasn't at home, plus there were really bad roadworks & got there to find she was absolutely fine and was hoovering! To be honest sometimes I think there is an element of attention seeking. She'd had a more serious incident over the weekend and did go to hospital via an ambulance to A&E. Because the ambulance crew made the decision to take her to A&E she was expecting to be admitted and she seems to quite enjoy a hospital admission. I wasn't allowed to go with her due to Covid 19. She'd was very put out that they put her in a taxi and sent her home at about 7pm after a day of tests. I wasn't told about this, I just got a call saying they thought she was fine but we're just waiting for her bloods to come back to make a final decision. Next thing I know she's at home, not at all happy that they'd put her in a taxi home as I think she thought that they would either admit her or phone me to collect her and then i'd either take her to our house or stay over with her. I think this was a factor in her behaviour yesterday.

Hope it goes well and you can manage to set some boundaries to get a balance

Does the relative have any insight that they have memory problems? It is common they they won't because - they don't remember that they don't remember.

This was like a lightbulb being switched on for me when I did my dementia course and I wish I'd known it years earlier when my FIL started to get dementia. We waited ages for him to notice and of course he never did.

She may need directing to the GP rather than leaving it to her own devices as obvs she doesn't recognise that there are any problems. It's also why you have the same conversations that lead nowhere.

With a diagnosis she would get additional support and you would also be clearer about where you stand in making your decisions.

I have read this so many times, the relative doesn’t want care etc but happy enough to hugely impact on your life well convincing themselves they are independent.
I’m afraid you need to be firm and make it clear whilst you don’t mind doing some helpful things you are not prepare to take on more as you have your own life.
You and your DH need to be in agreement and make it clear what your limits are and if care is needed they will need to accept.
Definitely get the MECS installed and you can self refer to adult social services and find what help you are entitled to.

This is very tricky and made more difficult by lockdown as there are volunteer groups who could help in normal circumstances but not sure how much is up and running at present. She just sounds lonely. Maybe you could talk to her openly about the fact that if she gets overly dependent on you she will struggle when you go on holiday. You could try and be a bit more formal about when she comes like having a weekly programme. On the days she does not eat with you she could maybe have a meal delivery service like Appetito, Meals on Wheels etc. It would mean she had to wait in for the delivery and is another face for her to see each day. Age UK used to provide volunteer visitors which are probably just phoning at present but may start to visit again as Covid settles down. They also have great day centres in most big towns where older people can make friends, get a hot meal and do activities. If she has any specific interests University of 3rd Age might have a group she would join locally. Is your husband an only child, if not, speak to rest of family and ask them to share the load. If they had set days to phone or visit that would give you free period of time she was not around.
And remember, they will not be here forever and being kind to others, especially if they have been there for you is important. If you can survive a few more months until Covid has settled or there is a vaccine, other support will be more available.

Lots of useful advice so thank you @Pantsinthewash for starting this thread. However I don't want to hijack it with my problems though but it's good to know I'm not alone

Thank you all for your replies and for sharing your wisdom and experience. You have all come up with helpful suggestions which we can hopefully work on over time. Covid has definitely had an impact on loneliness and isolation, particularly for the elderly. Thanks also to @MereDintofPandiculation whose comments about doing what is needed for you to respect yourself really hits the nail on the head for me. I have this long running internal debate "Am I doing enough?" "How would I like to be treated in this situation?"And (selfishly) "How can I get off this roundabout?" It's definitely important for my own self-respect to know that I have done my best by this relative and as @vdbfamily rightly says, they will not go on for ever. I will only get one chance to "do it right" and I agree striking a balance between everyone's needs is key.