Need to Rant

[Mystrose]

I’m making this long post because I’m very frustrated, triggered and worried. I know my partner loves me and wants to take care of me, but his disability is getting in the way.

He had a shoulder replacement at the end of last year and since, I’ve been taking care of him. For the first few months it was everything from hygiene to cutting up his food for him. Now, he doesn’t have any restrictions; he just can’t put his arm all the way behind his back. Things have been getting back to normal finally. Even though it killed me, I did my best to make sure he was cared for and happy. That was no small feat.

Now, it’s my turn. 12yrs ago, I was having a lot of foot pain and found out that the tendon that goes over the top of my foot was deteriorated due to arthritis. Up until about 2yrs ago, it just hurt if I over did it walking and it wasn’t a huge issue most of the time. I’ve put off surgery because 1. I’m scared to go thru the recovery. I won’t be able to put any weight on it for 3 months and it will take 6 months to heal. I need screws and they have to sever my Achilles tendon. 2. I don’t know if my partner can take care of me. I hate to say that because I know he loves me and would do anything for me.

He is disabled with a learning disability and his motor skills and hearing are not that great. He doesn’t understand things like taking initiative or thinking outside his own bubble without prompting. Like if he sees the trash is full, it doesn’t register that he should take care of it. It only gets taken care of after I ask him to take it out. He only has two chores… taking care of the trash and vacuuming our living room (most of the time I have to ask him to do them). Other than that, he plays his video games all day. I literally do everything else unless I ask for help.

My foot has gotten progressively worse over the past couple years and it’s been very bad this week. At the end of the day, it’s been severely swollen and it actually scares me because the swelling has spread to the whole top of my foot and my lower leg. It looks like I have water retention. I need surgery really badly.

Knowing all this about my foot. After seeing how swollen it it’s been lately, he still doesn’t help me on his own. He just sits there waiting for me to bring him his food and do all the other chores around the house. I don’t ever hear, “here let me help you with that.” or “what can I do to help?” Instead, I have to ask him for help and basically be his caregiver (I have to remind him to shower, brush his hair, put deodorant on etc.). I sat down after making dinner tonight and showed him how badly swollen my foot was and he was like…shrug. I made a comment that I should have remembered to get the ice pack out of the freezer before I sat down. Most people would go get it for you ya know? But he just ignored what I said and I got up and got it myself.

Last week, I asked him to wash a water bottle out so we could bring cold water with us on our errands (it was going to be over 100F). While he was doing that, I was trying to get everything else ready so we could leave on time and while I was putting my top on, I got stuck in it cuz I was all sweaty from running around. I called for him and said, “I need your help, please!” and he yells to me saying, “I’m busy washing this…” He didn’t know what I needed help with and I know I sounded upset… My fear of abandonment was triggered and the next ½ hour wasn’t pretty.

Now I’m thinking stuff like…Is this how he is going to be after I have surgery and I need help getting to the bathroom? When I ask for something to eat is it going to be an inconvenience for him to get up from his games to help me? I’m genuinely worried about this.

I don’t know what to do to help him understand. I have talked to him plenty of times and said things like, “if you see something that needs to be done, you can go ahead and do it. Like for example, if you see the cat’s water dish is empty, put water in it.” I’ve made it very simple, but he just doesn’t comprehend.

I feel like a nag sometimes, but at the same time, I know he needs to have reminders. I can teach him how to do things ahead of time but I’ll still have to remind him how and I can leave notes on things, but will have to remind him to look at the notes. I can make a chore/hygiene schedule for him as well, but will have to remind him about it. I will still have to take care of him, so things get done.

I really don’t know how I’m going to handle all this.

[ManekiNeko]

Hey Rosie, I’m so sorry this has been building up. It’s not easy supporting someone in every aspect of their day to day life, and it’s not easy having someone who isn’t able to register daily life aspects.
I have a few questions just because I don’t want to assume things and because I know that you’re very on top of things in general and probably have thought a lot about support networks- do either of you have disability support? I don’t know what it’s like there, but here National Disability Insurance Scheme covers a multitude of support. From therapy to day to day care. As in attending to assist with ADLs, cleaning, cooking, or even just taking out to care/activities.

I was thinking terms of district nursing initially, but that really only covers health issues/visits, whereas you’d probably benefit more from over all assistance.
Even having a cleaner once or twice a week could be helpful to you. Not because you can’t do it yourself, but just to take the burden off. I know where a lot of cleaners were affected by covid and my friend has one once a week and I know they appreciate the business.
We also have a group that does gardening and other services and they actually take people with disabilities to do the jobs. It’s such a beautiful thing because 1. You get a service for a low fee and 2. You’re helping people with various disabilities be apart of the community.
Utilising those services makes such a huge difference to everyone involved, but again I’m not sure what’s available for you.

Fluid retention can become a dangerous game (and that’s where I don’t go into medical talk ). In general your health is a first.

[Mystrose]

Hi <3

I was just talking to a friend about In-Home Support Services (ISHH), I’m not sure I need extra help with ADLs (my partner will help me), but I know I’ll need help with cleaning and cooking. I plan on making a bunch of food to freeze before surgery. The problem is the waiting lists for these things.

I think I need to have a conversation with my Social Worker to see what kind of services are available to me, thanks for reminding me of that.

I’m pretty certain it’s not water retention and is just the tendon that is injured. In the morning, my foot is almost normal looking, so the swelling goes down if I stay off of it. It’s not warm, red or painful, so I think it’s just normal injury swelling. I am going to make an appointment on Monday to make sure tho. Being Diabetic it scares me to have anything wrong with my feet and I’ve always taken very good care of my feet.

[Sita]

the idea of getting the issue fixed must be both exciting and scary, and yeah, there will have to be some work to figure out how to best remind him in a way that easy for you, but rewarding and motivating for him.
Making a game out of it, a treasure hunt around the various rooms ever, or just a colourful book with the daily chores written up. Maybe even draw him up like a super hero and he has to save the day (and you lol) everyday by vanquishing these ‘foes’.

hope you can get relief from the pain, and all the assistance that’s possible to help you through this. you’ve loved, my dear!