I don't know why this bothers me so much but I have resisted for a long time. I think it is about control.
I do so many other things to adapt to my reality this should simply be another one. It feels like the first time I called a contractor to do a job that I had planned on doing myself. It is partly about not wanting to admit I can't do certain things anymore and partly that I KNOW nobody will do the job the way I would. As a lifelong type A perfectionist I think that the fact that I have to ration my physical activities and be OK with not doing certain things makes me feel like I am someone else.
I know that these adaptations are necessary. Just like finding a blow dryer for my hair that isn't too heavy and using two hands to run a drill. I had to park in front of my building at work this week instead of the parking lot down the street so that I would have the energy for the 16 stairs up to my office. As the boss it is kind of humiliating that I have to do something that the employees are not allowed to do. I have the families of 65 employees relying on me to do a good job running my business and so I know I have to marshal my energy to do that well and not expend energy on stuff that is far less important. Oh well, pity party for me is done.
What kinds of adaptations do you all have to make?
That's me to a 't' ..... perfectionist ....... and a total control freak! It's been a long, hard road for me to relinquish some of these responsibilities in my life but I got there when I finally wised up to the "get help or it won't get done" reality we had started to live with.
I now have a cleaner to help with the housework, a gardener and I have just booked a painter/decorator to do the painting in our kitchen. Having someone clean my house has been the hardest adjustment because somehow it feels very intrusive and intimate.
Finding the right people has made all the difference. If you can get recommendations from family/friends that helps.
I swear by "staff". I haven't been in a position to always afford help but it really does make a huge difference. We have a cleaner who does the house top to bottom every other week. This means we only occasionally have to get the vacuum out and dusting is a distant memory. Having that help takes enough of the edge off that most of the other household chores have become more manageable. I think it's an important investment for the person with the disease AND for their housemate/caregiver who already does more than their fair share!
Getting over the idea of having someone clean your house is tough, but as Jane says, it makes a huge difference. Not only does the “stuff” get done, for me there is another benefit: I don’t have to think about it. Instead of wondering when I’m going to do it, whether I have the energy to do it now, contemplating when my next chance might be do do this or that, I think, “That’ll be done on Wednesday”. And I move on to other things. Easier on my body and easier on my mind!
Thank you folks for all of the feedback! It feels uncomfortable to have a stranger come into my home and deal with my dirt but I am going for it. And Jane I wish there was a caregiver helping me but I am the caregiver in my household. I have a peter pan husband who is bipolar and an autistic son with epilepsy so I am actually the one holding things together. I have someone mow the lawn and maintain the pool (I know this makes me sound like I am livin the life, but not really). I feel better about this step after posting here.
Another way of thinking of it is that not only do you run a company, which gives your staff much needed work, you will also be giving someone else the opportunity to earn a wage by doing your cleaning. I have a close friend and colleague who has someone do her cleaning, she is a nan to 6, chairperson of the local council, works full time with me, and runs the local brownie pack, phew! That’s just made me tried writing that! She says she no longer feels guilty getting her housework done as the lady who cleans for her is happy to have the work, so she sees it that way and is now guilt free.
Don’t see it as what you can’t do; but as providing another job opportunity for someone:)
This is so funny to read this. I have been grappling with this for a while. We can afford it, it really isn't that expensive. But part of my problem is my house is disorganized. I need help finding a place for everything and getting rid of stuff so someone can clean easily. Part of the problem is no systems were really set up. We bought the house and were in it 10 days after we first saw it! There was no time to settle in. And since then the house has seen 2 marriages, the death of a child and then my disability. I also fear the loss of privacy. Like when I am not doing well and wandering around in my night gown!
Maybe I should just hire someone to help me organize and the clean it weekly.
I am so glad I found this discussion. I just need to do it. Night gown and all!
Michael, you would just love a friend of mine, she just can’t help herself, she a tidy freak! By that I mean she tidies as she goes, last time she came over to mine for a cuppa she went to the toilet and while she was in there, cleaned my bath! When we have a get together I’ll cook but she is just one if those people who plays mum, she dishes up the food clears up and washes up lol, we have tried to stop her but she’s unstoppable with a glass of wine in her hand!, its just natural now. One time I had to phone her to find out where stuff was as she’d reorganised my kitchen cupboards . I’ll parcel her up send her out to you, she’s a god send!
Michael, you have a young adult son. Does he have any neatnik girlfriends who you could give some summer employment to? I have a former student who comes and declutters with me. She is very hard-hearted, but in a good way, and says “What do you want to keep that for?”. Then she creates a discard pile and takes it all away. I don’t know where it goes and I really don’t care. When decluttering, the hard part for me (besides letting go) is walking it to “the pile” and then physically taking it away. With my helper, the whole thing is fast and physically easy.
Sybil I bake my butternuts and scoop it out while hot! I have started doing this with pumpkins too. I ended up with a bloody hand one year peeling one (I didn't cut it, it was blisters from the peeler) I did not know I had PsA then but I seem to have sarted adapting way back then! I hope this helps Sybil.
I know what you mean Seenie! But unfortunately David's friends are all working this summer. They need money for school and are away working for summer camps and such. You would think having a gay son might help but he is a slob. I had day dreams of him helping to clean and decorate! No such luck.......I have the only gay son in the world who is more Oscar than Felix!
Thank you everyone for your kind words. Louise I particularly like the way you suggested that I think about this. It's funny that I feel proud of employing so many people in my business but could not see the obvious connection to employing someone in my home.
And Sybil... the butternut squash. Even without this condition it is a b*tch trying to peel one of those! I will admit to buying them precut and peeled at the supermarket.
Well I did it! And I even wallpapered one of my bathrooms this past weekend because I knew that I could ignore the house and be a vegetable for a few days afterwards. She cleaned the whole apartment and made the beds and I came home to a shiny neat home!
I am determined to work as long as I possibly can so I have made alot of adaptations. I have cleaners come to clean my house, hubby wasn't too fond of this but now he really likes it. At work, they want me to stay so they have allowed me to teach seated, my special duties allow me to be off my feet and the handicapped parking place is my assigned parking space. The housework was an easy one to give up, I have never been good at it, never liked to do it, and would have to stop to rest every 15 minutes or so.