Donna came home from her three-week stint in rehab (she broke her ankle in two places and needed surgery to repair it). I wheeled Donna through the lobby, into the elevator, and down the hall to our apartment. I opened the front door and got stuck with the wheelchair in the foyer.
When we bought our apartment, I insisted on being in a “roll-in” building with an elevator. For over twenty years I assumed our apartment was vaguely accessible.
Wheelchairs, at least the basic ones provided by Medicare, need a lot more space for navigating than I imagined. I thought I had cleared a path through the apartment, but it was too narrow. I had to move the hutch (full of Donna’s mother’s good china) just to get her into the apartment. To get into the living room, I had to shift the dining table, the coffee table, and the couch. To get into the bedroom, I had to move the bed, the dresser, and her reading chair.
I knew that neither the wheelchair nor the walker would fit through the bathroom door, which is 24″ wide. Even the knee scooter is a tight fit. She can use the scooter to get to the shower, but it is awkward for the toilet. I wouldn’t want to do that maneuver if I was in a hurry to pee. The commode will be in the bedroom until she is more mobile.
We have help. Medicare pays for a visiting nurse (twice a week), a home health aide (five times a week for four hours a day), and a visiting physical therapist (twice a week).
The first person who came to visit was Pema, the visiting nurse and case manager. She is from Nepal. I opened the door and introduced myself as Donna’s partner. She was friendly and talked with both of us about the services that the agency provides. She seemed completely non-judgemental.
The second person who came to visit was Fatou, the home health aide. She is from Senegal, and wears a hijab. I introduced myself as Donna’s partner. After Fatou got settled in, I ran some errands and went to the gym. Donna thinks the aide is there to help her, but I think she is there to give me a break. While I was out, Fatou referred to me as “he”. Donna was flummoxed and did not explain our relationship. It remains unexplained.
The third person who came to visit, was Miriam, the physical therapist. She is an East Coast lesbian in her sixties. I introduced myself as Donna’s partner. She got the butch part of the picture, but through her own lens. I’m not sure she saw the trans part. She ordered me to roll up all the rugs and rug pads. She ordered Donna to stop relying on the wheelchair and to start using the walker to get around the apartment.
Donna is a good patient. She accepts that until she heals, she is dependent on me, Pema, Fatou, and Miriam. She doesn’t mind asking for help. She is willing to do her exercises. I’m impatient. I can’t see Donna’s broken ankle heal, the way I could see her recovering from heart surgery. I get rattled every time Donna interrupts me to get her something. I get flustered when Donna makes a second request while I’m in still the middle of doing the first one. I get stressed if she needs to use the toilet while I’m cooking dinner. I don’t like to multi-task, especially when I’m tired.
I didn’t think Donna’s broken ankle would be harder for me to handle than open heart surgery. It is not a life and death situation. It is just a case of twelve weeks of limited mobility and a narrow doorway. We are only in week five. I’m impatient for our lives to get back to normal, and to rebook that cancelled trip to Italy.
Notes: Since writing this, Fatou requested to have her assignment changed, and Donna told the agency that they need to assign us someone who is comfortable working with us. Gracie is not happy about all the people coming to assist us, and is banished to my bedroom/study when any of them are here. She is, however, very happy to have Donna home, as am I.
A Boy and Her Dog 
This sounds like a real adventure. I can’t believe that there are weeks to go!
When H. and I met, I had just moved to the area because of a very close friend who needs twenty four hour a day care. Agencies would fail to send someone in the morning, and he would lie in bed for half a day. I did all of his care for most of a year, but phased out as he found some other options. (He is married with nearly grown kids now. Has never walked a step in his life.)
The moral of the story: H. knows that I am capable of caring for her. We have both been in this situation, over the years. But it is hard to not let it alter your relationship.
If I were you, I would use the agency to get out of the house as much as possible. You need the time so that you don’t start to feel too resentful about the whole thing.
Personally, I would make a fuss about the aide. She is not allowed to not take the position just because she does not approve of your life. I would at least need to pester the agency about this. They should be made aware of your rights, and informed they have done wrong if they let the aide back out because of prejudices.
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I think we now have a steady aide – the agency mostly hires women from West Africa (Sengal, Mali, Ghana) – and they are Islamic and many from small towns. Annise, the woman who came today, is from Haiti, and seems a little more relaxed with us. She is studying English and trying to get her GED so she can get a better job.
I’ve been trying to use the aide to get out, but the problem has been that Donna wants me there to show the aide where things are etc. so I lose a lot of time. Once Annise gets familiar with the routine, I should be able to get out for her whole shift. My therapist would tell me I need to learn to say “no”, but I’m sensitive to Donna’s plight.
I went into work yesterday for half a day (I’ve been going in one day a week lately), and am going to do two half days a week until Donna can be left alone safely for a longer period of time.
There are a lot of businesses in NY that hire within a specific immigrant group (relatives and friends of people who already work there) – we used to park at a garage where the “valets” were all Albanian, and the cleaning staff of my office are all from Serbia.
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My best wishes to Donna, yourself, and Gracie! I hope the healing process and the rebooking go well!
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Thanks! We go back to see her surgeon in two weeks and I hope he will let her start walking with a cane and putting more weight on the ankle. Yesterday was sad because it was the day we were supposed to fly to Italy, but there will be another time.
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My thoughts are with you! Sounds like you take good care of Donna!
When I had surgery (both my wrists, but one at a time) I was hospitalized for just two days and when I got home my darling wife let me rest for two full days before I had to start to cook again. She’s not much for fuzzing around with people, and she hates to cook. People around us often think she’s harsh on me, but I insist that she’s the reason I’m still so independent. She only see my healthy parts and makes me do all the things I can do on my own. She’s the reason people are amazed when they learn about how bad my arthritis really is. So if she’s lazy, energy efficient or helpful all depend on which glasses you are wearing at the moment. But I wouldn’t mind being pampered once in a while…
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Donna is fiercely independent, but she doesn’t mind the pampering either. I’m the cook and the food shopper – she is the person normally who straightens up and keeps things looking good. Both she and Gracie are a little spoiled, and it is my fault. It is my way of showing affection. I think Donna will use this as an excuse to get out of walking Gracie until the spring.
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Sounds like you and Gracie share some bewilderment. All the best to all three of you and loads of patience to you in particular!
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Thanks. I definitely need to channel that patience.
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This brings back a lot of memories of being a care giver for Candace several times over the years. It’s a tough job and tests your patience if it’s not something you’re born to do. I’m not. I am not a good nurse and I don’t find I have a lot of patience especially when my daily dose of alone and quiet time is taken from me. At least you have help. That’s a great thing to help keep you sane. I empathize with your situation and am glad to hear Donna is home and on the mend. I’ve gotten Candace trained now to try to make a bunch of requests at one time so I don’t have to multi task because I suck at that too and it also wears my patience down. Good luck, get lots of rest and take care of your needs too.
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I think one of the hardest things besides multi-tasking is that I have to get up before her and go to bed after her, and I haven’t figured out yet how to get in a nap (I should take a page from Gracie’s book and just conk out in the sun for an hour). I have a few more weeks to figure out how to pace myself and say no.
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I think we shift gears easier if it’s a life threatening injury/illness than when it’s something like an ankle.
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It also helped that when she was recovering from heart surgery every move took so much effort that she had to take long naps to rest and heal. With the ankle she is her usually busy self (just in one place) and is wide awake.
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I have found that Lisa likes if I check in with her frequently to see if she needs anything. She feels cared about and I don’t get interrupted except occasionally.
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I’m going to try that. The alternative (which is what I’ve done a couple of times) is to ask for an hour of quiet time without having to leave the house to get it. The problem is having a middle aged swiss cheese brain – when you can walk, you just go back into the other room(s) to look for it – or wonder why you are there at all. She has to send me.
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I have never provided care for an adult and I don’t picture myself being very patient. But it would help if they accepted medical advice and did what they were supposed to with medications, physio, and so on. I am sure my day will come!
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