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We haven’t really been updating the blog lately and have been asked by many of you why? I have been thinking about the question and couldn’t really  pinpoint to the reason. We woke up early today, well really early as my sister-in-law and her kids were going back to Canada on an early flight. When she was getting in the car, she would come back soon to see mom, without Inshallah. She then commented, I don’t even want to say Inshallah, because she is in so much pain.

That’s when it hit me. We have come to a point in our and mom’s life that it has turned to nothing but a waiting game. Mom has stopped eating properly,maybe  couple of morsels here and there,  drinking few tea spoons of water, wants people around her all the time, is seeing relatives who have passed away, and we were recently told by the nurse that her right side has gotten weaker, she can barely lift her right arm, and her face is a bit more lopsided. It seems she had another stroke.

We don’t expect her to last much longer. Let me rephrase and this might seem very insensitive, I don’t think we want her to last much longer.

To clarify, it is not because we are tired of taking care of her. As on of the comments posted said, this might be the blessing in disguise because of the reward and the chance to serve her. Its sure is hard and tough on mom but make no mistake, we would give everything to have her with us. But we would not be selfish and wish for her prolonged life, if she is to be the way she is.  As Muslims, it is not for us to ever wish death, because of a core belief, that Allah never burdens a soul more than it can bear. To wish death would be losing this core concept. And that is out of question.  We only pray that what is best for mom should happen and may her life and afterlife be easy.

Islamic belief of Almighty God (Allah in arabic) is that , Allah is All Knowing, All Wise and perfectly Just. Thus, we leave it to Allah as Allah is the Owner of All that exists and all that doesn’t exist; and just carry on with our duties with the belief that Allah knows and does what’s best.

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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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3rd Day

Mom has been in the hospital since Monday noon almost, its her third day today. She is a bit stable now and the blood pressure is slowly creeping towards normalcy. This morning it was up to 110/56 which is much better than 70/40 when she was rushed to the emergency room. Numerous tests have been done during these three days and she is constantly on IV fluids to replenish her body. The IV also has something called “dopamine”, which helps in increasing her blood pressure. Since, yesterday they have allowed her to start eating from her mouth, though she is not fond of hospital food.  The ICU doctors have asked us to brig some food from home because she needs protein and other nutrients, which will start today at lunch.

She has to be fed every two hours. It’s an awkward ( to say the least) feeling to see mom in this state with tubes sticking out of her hands, oxygen in her nose, catheter for urination in place, and machines displaying variety of numbers monitoring her. All she has become is a number. Her situation is based on those numbers on the screens, the numbers dictate when she goes home, they dictate how long she stays in ICU or what medicine to take.

Her neurologist visited yesterday to check on her and realized that her left side is weaker than the right side and her speech is little impaired.. We already know from the MRI done last week that there was a stroke sometime in the past but he wanted to make sure there is no new stroke. He ordered CAT scan which was done yesterday and we are awaiting the results. Today, we got the news that there are traces of blood in her stool. I am not sure how they are going to tackle that at this point but yesterday the doctor wanted our consent for colonoscopy and endoscopy.

These tests are not pleasant but mummy seems to be in good spirits and seems to be quite fond of the nurses helping her. The community support we have from mine and Mariam’s friends is huge and extremely helpful. At home, its weird for us without mom, especially for Papa whose life for last few years have revolved around taking care of mom. I can see him being down but at the same time as bad as it maybe , this is a small break for him. It’s a break he doesn’t want..

Thank you all for your kind words, help, support and prayers… may you never have to deal wit this disease ever, not even remotely.

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Updates

Assalamu alaikum (peace be into you)

Since we’ve had a lot of people asking about how her health is (which we appreciate immensely, jazakum Allahu khayran), it will be easier if we update how she’s doing on the blog than respond individually to each call and text.

Her bp alhamdulilah is now 120/62, which is great! It’s been stable since last night. Her diarrhea is still there. She tested positive for occult (not sure about the spelling) which means blood in stool (sorry to get graphic) which could indicate colitis (inflamed bowel). She will probably need to get a colonoscopy and endoscopy.

The CAT scan showed no new strokes, so the main problem at this point is gastro-intestinal. Raised temperature is still there. Dr. said hemoglobin is raised but still low, I.e. she’s anemic.

She is a little bit weak right now. Slightly agitated since she had to be force fed a nasty tasting medicine. She was extremely mad at the RN who gave it to her, and cussed her out in urdu.

Emotionally-speaking, Mummy’s mood varies. When her favorite nurse comes for the night shift, Mummy is in an excited mood. She asks about her all day, and when she comes, Mummy feels relieved. She sometimes says that she would like to leave the hospital, and just go home already.

Sometimes she’s happy, sometimes she’s sad, sometimes she’s in a good mood and calm, and sometimes not. Sometimes she sleeps like a baby, sometimes she can’t sleep at all.

There’s no pattern, it just depends on who’s there, and who’s not, what she eats and what she doesn’t.

Yesterday was the first day of solids. The only thing she was interested in being fed was the chocolate cake. This morning for breakfast, the nurse had to force her to eat. She needs protein, iron, she needs her nutrients. She was pretty emotionally distraught after that, we had to calm her down.

We’re not sure how long she’ll be in the ICU for, she still has tests to get done, vitamin and mineral levels need to go up, and more importantly, the diarrhea needs to stop.

We appreciate the support that we have received. Please continue to make dua for her.

Jazakum Allahu khayran!

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ER

Moms blood pressure has been low since list night. This morning when we checked, it was 70 over 40. We called in paramedic and took her to the nearby hospital emergency room.
She is stable right now but her bp is still low. We are right now waiting on her bed in icu. Mom is up and talking. She is asking about Mariam a lot who is running some errands.  I asked her if she likes Mariam. The answer was yes, she is nice. I like her a lot. So I asked her if I should marry her. The answer was yes you should. Then she said isn’t she your sister? I said no Gurhia is my sister, mariam is my wife. I asked her who is Gurhia? She is my daughter, was the reply. I asked who is Asfu? Oh she is my daughter too.

She said then… How we have moved away..

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