As always, when I have to force my brain to talk on a serious subject, it started by sending tears streaming down my cheeks before a single word has left my lips. We had to talk, so those first words had to leave. “Do you think, we’ve reached the point, where we need to have outside help?”
Over the last few weeks, there has been a series of silly little things, that were leading me to believe, that Adam was struggling a little, with looking after me, doing all the chores and living his own life. There wasn’t anything major, but small things. So far this week, it includes forgetting on Monday to phone the doctor and sort out my repeat prescriptions. When he did, it was followed by my doctor phoning me, to question what had been ordered? Two months ago, he ordered the drugs but didn’t phone the chemist, to ask them to pick up and fill the prescriptions. Then there are other silly things, like only leaving me three bottles of juice instead of four, which meant I was pushed out of routine and didn’t take my afternoon meds, nor ate my psyllium pancakes. Forgetting to tell me to have a shower, as I totally forget to if he doesn’t tell me it’s time. I just went 10 days without one, the other week it was 8, I could carry on listing, but none of them alone says anything of importance, it the combined effect. It was beginning to feel as though almost every day, there was something small, but it all adds up and causes me unnecessary stress, something we both know I don’t need. So there I was sat in the kitchen, with tears once more flowing and facing with what for me, has been my biggest dread, outside carers.
He was totally at a loss when I first said it, other than he thought that I might be saying that I was in need of more help having my shower, which other than getting dry, I don’t. When I explained all the different things from the recent past that I could remember, he began to understand, but totally didn’t agree with me. When I told him about the doctor’s phone call, he was at a loss and took out the list he had read from, he was right, if he had done so, there was no reason for the call. Somehow, the Duloxetine that I was on for a few days, but hadn’t settled to and came off, had been reordered. Adam couldn’t even remember the name of the drug, there was no way he ordered it. We came to the conclusion, that the receptionist, out of trying to be helpful, added it after he had ended the call, in the belief he had forgotten it. As for all the other things, well I agree, I was probably blowing them up, something I totally admit my brain does when anything isn’t exactly as it should be. I know that part of my original question wasn’t just about Adam making human mistakes, but because I hate being angry at him, being angry at an outsider, once they had gone, might be a better option.
I know it should be the perfect answer having your partner, the person who knows you best, taking care of you, but it isn’t always that way. I know already from what Adam has said, that he isn’t put off at all, with the idea that I will need growing care. He is perfectly at ease in dealing with washing me, dressing and feeding me, even when needed cleaning up if I’m incontinent, but I’m not. I have been perfectly open, both here and when we talk, that I am finding everything about daily life, more and more difficult. Right now on top of that, I have a collection of stressful events hanging over me, and his mistakes, are just making things harder.
The odd thing is, I think we may have found an answer and it’s not what you’d expect. Rather than taking all these things away from him, we are going to try giving him more, or, as Adam put it, to let him “organise me”. Starting with showers, he isn’t going to shower me, I will still do that, but he is going to help me get dry. For about two months now, I have relied on air drying, not the best in winter but towel drying is now too difficult and not very successful. With him having a role, he has to be here and therefore, by being part of it, he won’t forget. I have also given him permission, to put me right, if I forget to do something due to my routine being out. He is now allowed to correct it himself, rather than my getting angry and storming off to correct it, when he points out that I’ve once again forgotten. I am going to also let him do more for me, so he is part of even the small things like fetching and making meals for me. Anything that I already know he wants to do for me, but I have stopped him from doing to date, I am going to try letting him “organise”.
I have no idea if this is going to work, but we can but try. If it does, well it means the constant feeling of struggling that I have, should be reduced. Mistakes should be less, or fixed more quickly and without stressful impact on me and Adam. Hopefully, this will make Adam happier because he will feel as though he is doing real, physical things to help me. If it doesn’t work, well it will highlight where outside help is truly needed.
I hadn’t truly realised just how pushed out, my wild independence streak was making Adam feel. In a way, I was making him feel useless, despite having learnt to trust him with the care of our home, the fact I wasn’t letting him directly care for me, was hurting him. He has said before that it is painful watching me struggle, when he is sat there with two perfectly good hands and legs, I push through the pain, when he could help, but I won’t let him. If the tables were turned, I doubt that I could have shown his patience, despite the verbal abuse I might have received, I wouldn’t have listened. I guess, it’s kind of stupid us both being in pain when both of us could be relieved of it. I used to be really good at putting myself in the shoes of others, I guess, I have just been forgetting to do so. Not because I have become hard hearted, but because I thought my independence mattered more, thanks to the position I was in. That along with the fact, that I didn’t want him to resent my constantly asking for help. Getting the balance right, is really hard. Mind you, what in life is easy, when it comes to relationships for couples like us.
How do I feel about this? I honestly don’t know. Last night, I had mixed feeling, partly because I felt as though my health is finally winning, but it was doing that already, whoever took on my care. I still feel that it is wrong, after all, Adam is my husband, not my nurse or my maid, but I do understand his need to do things the he believes, will help me. I know, that I do need more help, I am not managing to keep up just with the little I do, simply because everything, and I do mean, everything, is taking longer and taking far more out of me. There are times when just getting around in my wheelchair is both painful and slow, but pride stops me asking for help, which is stupid, so I will ask. To date, if he sees I am struggling, he has done nothing because he knows, he will only be snapped back at with, “Leave me, I’m fine”. So now, he has permission to tell me he is going to push me, he is going to take over and “organise me”. Given time, I might get used to it, one way, or another, I guess that I have to.
Please read my blog from 2 years ago today – 12/02/2014 – Just one moment
Two Rooms Plus Utilities 
Luv! I don’t have the issues you have and I have Carers. The ‘right’ Carers can be the best thing. Take some pressure off you & Adam, to b I got the outside world in. Just helping you dry & dress & do a few dishes while you shower will make a huge difference. Give you some energy to do other things……..Go for it!
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I guess the real problem is that I fear them interfering with my life, if you know what I mean. Finding that “right” carer is to me the biggest issue. I find stranger unsettling and although they may be here to help, I would feel pressured. On paper, yes, it would make life easier, but in reality, I fear it would do the opposite. Not to mention the stress of the Social worker aspect. It is though, on my list of things I have to look into, it is an undoubted reality of my future.
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Admittedly, it’s a process. Let the agency know the typ of people you want to have come to your home. I only have women careers who will see me naked. Kinda standard. Most are 50+, and it’s good to have 3-6 different people. If your regulars aren’t available they can send others that are even vaguely familiar. Put together a small task list so you are prepared and not expected to need to be ‘on’ the whole time they are with you. List might include, help you after your shower to dry and dress. Maybe do some dishes or put some clothes on the line. Adam can bring them in when he’s home after work? If you mis your a cakes, you can have them cook them? And if they have a crappy attitude or rub you the wrong way, you can ask the agency to put them on a list not to be sent back. Having careers is a great way to bring the outside world to you. I find my careers these days know me better than my family or friends. Try them, then refine your process.
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Thank you, these are all things that I hadn’t thought about. Outside carers are an alien world to me. We have Social Services coming to see us at the end of next week. It’s the first step and you’ve given me a lot to think about (((Hugs)))
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Just curious why you can’t put your showers and meds on the schedule you follow every day, seemingly to the minute? Also curious how you can remember that you went ten days without a shower two weeks ago. I don’t expect you to post this….it’s only meant to point out that you should be careful piling everything on your overworked husband who already can’t remember all the minutiae of his life … for his sale but also for yours. He could easily get sick himself from walk the stress on him. Look at the exhausted blogs of caregivers, who go on despite not wanting to anymore. The woman describe yourself to be now (looking 20 years older than your age, wearing same clothes all year, not letting him have any daylight or fresh air in your flat, grey roots, nasty feet, etc) does not sound very good in terms of keeping love alive. I just can’t believe your solution is to put MORE responsibilities on Adam. You should really think about getting someone in for a few hours a week for personal hygiene and light housework. I’m sure this will make you angry, but since the blog comments you get haven’t said this, I will brave your ire. Btw, I have ms and my husband cares for me. But I don’t ask him to do TWO full time jobs and sacrifice himself to me.
a concerned admirer
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It doesn’t make me angry, it was the reason that I wanted to get help in. If you look at the very beginning, you will see that our words are almost identical. It was during our conversation that we worked out when I had last had a shower, the last one was notable, due to something else that happened that day.
I have explained many many times why written instructions, alarms, and any of the other so called memory aids don’t work. My brain, simply ignores them. Just as one missing bottle of juice meant I didn’t go to the kitchen and because I didn’t go there, I didn’t take my afternoon meds. Unless every day is totally identical, I go into a spin. I get lost and wonder on without knowing. I only leave this seat, four times a day, if the trigger to move isn’t there, I don’t.
I’m not sure where you found anything about my looking older, I don’t. Yes, a little older than I did, especially when my roots show, but I still don’t look my age. I totally admit that I feel more than 20 years older. Right now and for about 6 years I think, might be 5, I have worn the identical pyjamas, pressure socks and dressing gown. I add a thermal under layer in the winter as the house is cold, but other than that, each set is identical, I’m not sure why you mention this or how it is relevant to anything? I did exactly the same thing when I was able bodied, short black knitted jumper dress, thigh boots, thick tights and a full length coat, every day that I left the house for about the last 4 years. I didn’t want to wear anything else then, than I do now, I don’t see why I would now? On top of that, I also don’t see any point spending the little money we have, on clothes. It makes no sense?
Yes, the curtains are closed all winter, to keep the heat in, we can’t afford the heating so we do everything to keep the bills low. Just as we don’t use lights any more than the minimum. I spend most of the day with only the light from the TV and computer. Electricity cost and we can’t afford any more. In the summer, they are shut during the day when he is at work, because I can’t manage to move them, if the sun is blinding me, what am I supposed to do? He opens them for the evening and shuts them when dark so the neighbours can’t see in. Where is the problem?
Adam was the one who offered to do my feet, because I can’t, he hasn’t touched them for over I year I think. I now have someone who comes here to do them for me, arranged because he was struggling. I arranged it despite the fact I am scared of strangers in the house, I hate anyone being here. Just as I was the one who was offering to bring in carers. It is Adam who said no, I think you should read this post again, as from your comment, you have it totally twisted. He is the one who wants to take on more, not me. I listed the things that have gone wrong, as I did to him as a way of trying to get him see, that things aren’t working as they were. In his words, he want’s to “Organise me”.
Adam and I are very much in love, there isn’t the slightest doubt about that. There have been several posts lately which say that in capital letters.
By the way, he has only one full time job and spends every evening doing just what anyone else would, sitting watching TV. Apart from light housework, occasionally, (another good reasons for keeping the curtains shut, and strangers out), putting the shopping away and sorting out my meds, and four bottles of juice daily. I don’t ask him to do anything.
If I missed something, please let me know, I’m perfectly happy to reply. 🙂
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Sigh….I remember so clearly the day when my then-87-year-old mother finally agreed to accept the in-home care for my father that she had been fighting off for so long. It took several major falls requiring hospitalization, she having dropped him trying to get him on the toilet etc, before she would agree.
And then we had a whole team, so coordinating care was a nightmare.
The solution, one that might be of use to you and Adam, was a white board schedule, with medications, doctor visits, physical therapy, and all the other care giving items. This way there was no confusion. I was responsible for keeping the schedule updated so that as things changed, the carers would keep current.
The master schedule was done weekly, and whoever was responsible had to check off things as they were done: bathing, transfer from bed to chair, toileting, appointments, etc.
Since either my mother or I was present most of the time, we could keep up on, say, refilling prescriptions, and it was also useful for us to check the board to make sure it got done, and that we weren’t doing something redunantly, which as you know is easy to do!
Even if it’s just you and Adam, a “memory board” (have you read the book by that name? It’s wonderful!) is so helpful at avoiding errors and smoothing the way, avoiding those arguments over “has this or that been done, and by the way…”
Let me know how you do with it, if you decide to try it! You can choose to do a computer spreadsheet, if you’re good at that sort of thing (I’m not–I’m the type who has to physically write something in order to know it exists😜)
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It is so hard to find that balance – when to depend on your husband for help and when to figure out something else so he’s not overburdened. I have RRMS, so not as severe as what you are dealing with. But I do have a lot of limitations. My husband works very long hours, but still wants to take over the housework, etc. that I can’t do regularly. Unfortunately, most of the time that’s just not realistic. Many times he’s specifically told me to stop doing things (particularly anything that requires me carrying heavy or awkward things down the stairs), and that he’ll do it. But then he doesn’t. That makes perfect sense and I don’t blame him. If he works a 12 hour day he doesn’t have the time or energy to do anything else. But at the same time, I have found myself pushing him away and telling him I can “do it myself”. So then he feels rejected and frustrated. We definitely have not got the hang of that balance yet. Trial and error! (Maybe it’s that MS takes away our balance in more than one sense, huh? lol)
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