Home!

Mummy came home Sunday night. Since then it’s been very busy around here. This is my second attempt at writing a blog post on the topic of Mummy’s return. Let’s see if this one actually gets finished or not.

Mummy is now under hospice care. To clear the confusion: Mummy is not in a nursing home or in any other facility, she is at home. Hospice basically means hospital care at home. So the nurses come visit her twice, maybe three times a week. Those funky electric beds that go up and down were provided. She has a hospice doctor, a hospice RN, and a hospice social worker that handle her case. They are on call 24/7. They provide diapers, gloves, diaper rash cream, absorbent diaper blankets to be placed underneath her. They come twice a week to bathe her, if we need volunteers to babysit Mummy while, for example, I take Papa to Jumuah prayer, they provide all that. Keyword: FREE! We just have to pay for wet wipes (this is where the handy dandy Costco membership comes into play), gowns (Walmart), and any towels, sheets, pillows Mummy might need (Walmart, Walmart, and Walmart, respectively).

All this comes with a caveat, though……….. They only do this for people who the doctor gives a prognosis of six months or less to live…………….Which means to get all this assistance………Mummy had to get a prognosis of six months or less to live……..which means……The doctor thinks Mummy has six months or less to live……..

Even though we were expecting it, the official doctor prognosis sort of hit us in the face like a pile of bricks.

Obviously, her life is in Allah’s hands, it doesn’t matter what the Doctor’s prognosis is, if Allah wants to take her soul 6 months or 6 years from now He will. What the official prognosis means is: her rate of deterioration shows that she might not last long, and if she does, her quality of life isn’t going to be good. Since her health has gone downward so much, there’s medically no turning back and making things better. This doesn’t get better, it gets worse and worse until…………”it” happens.

At home, Mummy is in such a state where if she is not medicated, and she is awake, she will be yelling and screaming non-stop from morning until night (which was yesterday for us). Literally. She woke up 3 times the night before last, had to be medicated, then woke up in the morning, was yelling all morning, all afternoon, and all evening until 9 pm where we gave her something stronger (by recommendation from her hospice doctor) and finally she passed out, waking up only once at 6 am today. She yelled so loud yesterday you could hear her from outside, with all the windows closed. For hours and hours. Just yelling and screaming. Think about that for a sec.

This morning we woke up with Mummy having soiled her sheets. Diarrhea started up again. Only this time, the nurses don’t check in every four hours, they come twice a week. So changing her, cleaning her, changing her bedsheets, EVERYTHING, needs to be done, by us mind you, while she is on the bed. To add an extra kick of cayenne to that, she’s yelling, crying, screaming while all of this is happening. To kick it up another notch, bhaiya (Anis’s brother) and Gurhia baji (his sister) are leaving in a few days. So we will go from 8 hands, to four. Which means it’s just Papa, and me. And Anis at the end of the workday.

I’ll admit. We’re new to this. We’re not as efficient as the nurses in the hospital, who could change a bedsheet with the patient on it with their eyes closed. It takes us a few tries, and that adds to Mummy’s discomfort, which increases her yelling, which adds to our anxiety, which leads to emotional meltdowns on everyone’s part.

If our stress level was high before, it is now orbiting space. If we had a meltdown every month before, it’s almost on a daily basis at this point.

Amidst all of this, we cannot let this affect how we talk to and take care of Mummy. It just cannot be done. If we’re stressed out, if our insides might explode from anxiety, we still have to speak to Mummy in calm, soothing, reassuring tones, regardless of what’s going on with us.

However we were caring for Mummy before, it is all out the window now. She has new needs and a new routine. Her laundry is done separately, several times a day sometimes because of all the sheets, towels, gowns, linens, etc…her food is different, her tolerance for pain is lower….we have had to figure things out from scratch again, but we’re finally getting the swing of things now.

Since she doesn’t have that much time left, we do encourage those who wish to visit her do so before it’s too late. Anis always says do what you can now so that there are no regrets later.

However, if you are going to visit, there are some guidelines. Please note, these are general guidelines, these are not meant to offend anyone or cause tension or hurt. Please share it with family/friends who might visit. From talking with Papa and Anis, these are the guidelines we agree upon that are meant to make Mummy’s life and our life easier:

We have been taking care of Mummy for a year, we know what she likes, what she doesn’t, what works for her and what doesn’t. Please, please, please let us care for her the way we think is better for her. If we are trying to get her to do something, it’s not because we are trying to annoy her, it’s because through consultation with her doctors and nurses and her immediate family, we believe this to be the best thing for her. For someone to come once every few weeks, months, or whatever, and all of a sudden decide they know what is best for Mummy based on what she used to like just adds to our already high stress level. We are her caregivers, let us do our job the way we see fit. It’s not a power struggle, it’s what’s best for Mummy. We’re not just looking at her behavior for the two hours that you are there, we are looking at what her behavior has been all day and all week. If we think it’s time for Mummy to sleep, eat, sit, poop, whatever, we would appreciate it if you went along with our plan and not yours.

Again, this isn’t personal.

This is what we need to keep things flowing smooth, and would appreciate it if everyone was on board instead of wasting our energy trying to convince you what is best for Mummy. Our patience is thin, our stress is high, just work with us and we’ll appreciate it a whole lot more.

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  1. #1 by Atif on October 5, 2011 - 1:16 am

    May Allah give patience to you and all those involved in serving her at this stage. Just keep in mind that this is probably the highest rate of ajur you are getting in this point of your lives.

  2. #2 by IsobelandCat on October 5, 2011 - 12:48 pm

    My mother also has dementia. She has recently moved into a nursing home. She does not shout or scream, but calls everyone darling, and says she loves them. The doctor thinks she may live another three months. She has been proving medics wrong for nearly ninety-two years.
    Her dementia has been a journey for all of us who love her, who still reach the parts of her mind that stay closed to strangers.
    Good wishes on your journey and may your mother find peace.

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