I've been reflecting on this past year, as I'm sure many of us do at this time of year, and have come to the conclusion that I have no life of my own. That might sound melodramatic, but it's true - my everyday life consists of carrying out husband's needs and wants, organising his appointments etc, and clearing up all his messes, things that have gone awry and the general chaos he creates, often unwittingly, on a daily basis. And of course all the housework, planning and cooking meals - husband is oblivious to all that, he clearly thinks we have a house elf (a la Harry Potter) or a housework fairy. This morning, for example, he announced there's a mouldy cucumber in the fridge - so why didn't he take it out, rather than leaving it for the (clearly not doing her job properly) house elf to deal with? Because it simply doesn't occur to him to do it, that's why....it's my job!
Husband's daily life consists of watching TV, eating 3 square meals a day plus snacks, playing games or watching endless stupid little car reels on his computer, and falling asleep in between times - even whilst sitting in front of his computer. To be fair, the falling asleep he can't help, it's the combination of his meds and the heart failure not pumping enough oxygenated blood around his body. He's been told several times by both his GP and his cardiologist that he must keep active, both physically and mentally, to ensure he stays as healthy as possible. I do try to push him to do things, little jobs etc, go for longer walks with the dog (he takes her out for 2 10-minute brief strolls around the block), but, to be honest (I hate that expression, it kind of implies one lies the rest of the time!), the moaning, grumpiness and downright sarky comments and scowls that ensue mean it's not worth it, I give in for a quiet life. Not that I ever get a quiet life!!
Husband is quite predictable, there are lots of things that I know are going to happen every day - he drops things or knocks things over, he stumbles into me and knocks me into the wall or door frame, he loses things constantly, he asks things that I've already answered several times, he constantly denies that he's done something - or I have. In other words, he's always right and I'm always wrong. I know I'm going to have to repeat things to him a couple of dozen times a day, every day. He does often throw a curve ball though and comes out with some new crazy idea that will become his latest obsession for a few days, couple of weeks or sometimes longer.
One of you lovely readers said something the other day (I think it was Jane in London) about the importance of setting boundaries, as the person we care for doesn't always realise we both need boundaries. Yes I agree - but what if the loved one either doesn't remember or simply disregards those boundaries? As an example, some of you may remember that I always go to bed around an hour before husband does, as by the end of the day I'm in desperate need of some quiet time to myself, to process the day, read and just relax for a while so I can go to sleep. I've told husband numerous times that he shouldn't come into my room after I've gone to bed, unless it's important or he needs something. But he does keep coming in, mainly to tell me about things he's just seen on the TV! I would say 60-70% of the time he's just forgotten the rule, the rest of the time he just totally disregards it. I usually try to have an hour or 2 in my room in the afternoons, after I've done all my jobs - I use the time to do banking or admin stuff on the computer, do a meal plan and shopping list, look up a couple of recipes, send a couple of emails or answer messages. Once again husband is asked, or reminded, not to keep disturbing me with pointless, inconsequential or unimportant stuff.....does he take notice of that? Nope, not at all. I don't see how I can get him to stick to boundaries, when he either can't remember or just tramples all over them. It's like the rules don't apply to him, and that I'm at his beck and call 24/7.
Well, somehow or other things have got to change, or I'm going to have a nervous breakdown or end up walking out altogether. Happy new year? Not if it's more of the same.
I know you're not a joiner-in, but is there somewhere close you could go, on your own, for a quiet coffee and maybe a chat with other like minded ladies? Maybe the GP surgery has some information. Other than that, a BIG sign on your bedroom door that says DO NOT DISTURB. Although I expect he'd either not see it, or ignore it. As for ignoring the rotting cucumber, that's the sort of thing my husband would do. He frequently says this or that needs doing, and when I ask if he did it, he just shrugs and says no! Aaaaargh! Men! I do hope you find a way to get some time for yourself. It's vital for your mental health. xx
ReplyDeleteYou need to get a life.
ReplyDeleteYes, it was me who mentioned boundaries (I'm a great believer in them 😉). I have to keep restating them for my husband, as his dementia means he doesn't always retain the information, but I find it much less stressful to calmly repeat the boundary I've set, rather than having a bit of a go because he's done the wrong thing. I don't know quite how to explain it, but somehow it's as though I'm saying it in the third person and I don't get so wound up. But I think you are suffering badly from the lack of company outside the home - is there a Carers' Network in your area ( my GP got me put on mine)? They can provide contacts and a chance to join up with other carers near you, who'll understand how it is. Also, when I realised I was becoming a bit isolated I volunteered to help a bit at a local charity where I've met a little group of women around my age who understand about my husband and the limitations that puts on my life, and are there with a friendly ear and the odd cup of coffee when I need it. I know it can be hard to find suitable company in the local area, but it's definitely worth having a try and I think it would make a world of difference for you.
ReplyDeleteI would definitely recommend joining a carer's group (in most areas there are carers' cafes and regular meets) which hopefully would leave you feeling less isolated. And by joining a group you might even find there are other organisations that can help you. Just meeting other people in similar situations would help. Being isolated when you are the main and sole carer is not good for you. I looked after my husband for almost two years when he was dying of cancer. Friendship and support groups really helped. If I hadn't been able to have time to myself through things like these I would have gone mad!
ReplyDeleteHave you thought about a bolt for your bedroom door. You definitely need 'ME' time. A carer's group or maybe the WI, does your Dr's surgery have details of groups you could attend or maybe a gardening club. I do hope things resolve themselves for you. Xx
ReplyDeleteIt sounds as though you've got a lot on your plate. I'm not sure what the solution is, but you definitely need some time to yourself. Is there somewhere you could go outside the home that would bring you a bit of peace and time for a break?
ReplyDeleteMy father-in-law relied on my lovely mother-in-law for a lot of things. He took for granted all that she did. Unfortunately, she recently passed away and only now is he realising all that she did. It saddens me that he didn't appreciate her much when she was alive.
Hi my husband usually says oh such and such needs done and I comply, but I now have osteoarthritis of my hip and ankle and just cannot do it. He has been a gem doing everything he can telling me not to move he will do it. He was a production manager and just gave orders so on retirement he gave me the orders. He loves me and cares very much but I have always been very capable but now I have a problem and he has stepped up. Love him so much.
DeleteI hope you find a way to have some me time, out of the house. A local caregivers group could be a good thing to join. Nextdoor.com may list a group for you. Maybe you will meet someone to take turns watching a spouse, You could go out and have coffee with a friend, etc. Best wishes to you.
ReplyDeleteOh Sooze I know exactly how you feel. I’m in the same situation as you. Its exhausting. Lots of kind suggestions here especially the garden club, I’m sure you would love that. The only problem…husband might want to go with you. However you could take it in turns to go alone? I’ve tried post it notes re: recycling etc, they haven’t worked, but worth a try. Jane’s suggestion about boundaries is sensible but you have to be consistent, I do try but it is hard work when someone has a memory loss, I do need to be more consistent. Carer’s Groups could help but again it depends where they are located as you don’t drive. Like you I have been trying to think of different strategies to cope. The one thing I know for certain things have to change… Like you I am physically and mentally exhausted. “2026 = Self Care” for me, that is going to be my mantra for 2026. Let’s do it together Sooze and anyone else here who feels as we do. Sending you love. June xx
ReplyDeleteI’ve been following you for a very long time. Here are my thoughts.
ReplyDeleteIf you were suddenly left on your own what would you do then. You don’t drive and I hope you would not stay all day every day in your house. Try and think what you would do then and then try and start doing those things now. I am now on my own and my life is completely different now. I have friends of all age groups. My last thought is you don’t always have to answer him 20 times and he might get tired of asking. A bit of silent treatment works wonders sometimes.
My name is Sylvia.
ReplyDelete