Mummy’s hospice phase is completely different from her pre-hospital phase in many ways. For one, now she is completely dependent on everyone for everything at all times.
Before, we would physically take her to the bathroom, but she would do the normal bathroom functions on her own. Sure, it would take a little coaxing, but she would tell us when she needed to go, and we would take her. Now, she does not leave her bed, and needs the assistance of tubes and medicine to assist her with simple bodily functions that she had been doing for the past 63 years of her life.
Her food intake is different. Before, atleast she would have one regular meal with all of us at the table, and she would eat whatever was cooked for dinner. Now, it’s mostly fluids, or semi-fluids, like applesauce. It’s hard to get her to eat solid food now.
Her stay in the hospital took a huge, ginormous toll on her. Wires and tubes and pokes and prods….for a patient with dementia who suffers from anxiety, OCD, depression, and God knows what else hasn’t been diagnosed, it was her biggest fears rolled into one, horrid, frightening experience.
Her hospice doctor came to see her today. He ordered some more medication, and ordered her bladder and bowels to be flushed. The nurse came later with the task to perform the glamorous job. Mummy was extremely uncomfortable with this procedure, and was frustrated to the point where she didn’t have the words to express how much she hated what was being done. But it had to be done for her wellbeing’s sake. She was given sleep, pain, and anxiety medication after that, and is now sound asleep.
The physical parts of this new phase are extremely difficult for us. Changing her diaper is a workout, leaving me out of breath and sweaty-faced.
The 4 A.M. wake up call is rough. In the middle of our deepest sleep, we are awoken by Mummy’s yells. Anis and I must wake up, calm her down, and find her anxiety medicine, while trying to open our other eye and turning on the light. It’s tricky, because she has a dozen medications. In the middle of our sleep, we have to administer the right dose of the right medication. It helps to either keep the medicine ready the night before, or make a mental note of exactly what to give and where to get it if or when she wakes up at 4 A.M. so that we can just jump up and know exactly what to do.
We’ve found our routine now, finally. Good thing it took less than a week. Plus, having Anis’s siblings here for the transitional phase was a huge help. His sister especially was a huge help. I would have been running around like a chicken with no head without her support.
When she leaves on Monday, it will all be on our shoulders. Anis will be at work, and it will be all on Papa’s and my shoulders to figure everything out and keep things in order. We’ll deal with that when it comes. For now while she’s here, I can breathe a sigh of relief knowing there’s an extra pair of (willing) hands ready to dig into whatever needs to be done.
After Monday, there will be another adjustment period, but it shouldn’t be too bad. Mummy’s routine is sort of set in stone, and her hospice case manager calls every other day to check up, her social worker is monitoring her case closely, and her doctor keeps an eye on her charts and updates. So even though it may seem like we’re all alone, we have this new support network who directly know everything about Mummy’s situation to help out, advise, and sometimes even just listen to us vent.
Even though we’re sad Mummy’s on hospice, I’m glad she’s getting the close attention and care that she needs. It gives us a few less things to worry about, and her medical team have been extremely helpful in assisting us with Mummy’s new phase. 24/7 assistance if we need it. Any question we have, whether dumb or important, they are available to answer every concern.
We may be physically tired, but, ironically, we have peace of mind. Hospice care was the hidden blessing we were waiting for. We needed help desperately, but didn’t know if it was affordable, or even possible, and we wanted it on our own terms.
Alhamdulillah (All praises be unto Allah), Who Knows what we needed, without us knowing how to verbalize what we needed, without us even realizing what we needed, or that what we needed was possible or even attainable!