Goodbyes, updates, and moves…

Gurhia baji left Monday. She’ll be back in a few weeks so it shouldn’t be that bad. Mummy did get teary-eyed, naturally.

She and I sat down on Sunday to make a list of things to feed Mummy. Since her palate has completely changed, we have to sort of reinvent the wheel. Through trial and error we came up with ideas for breakfast, lunch and dinner.

Mummy gets anxious when people are over, because she wants to sit outside with them in the living room. It helps if we don’t talk as loud as we normally would, but not very much. It takes her a while to go to sleep because she’s so anxious to sit with everyone and talk.

Right now, her main problem is anxiety. She constantly wants someone to sit with her, hear her talk about how much pain she’s in, and give her medication for her pain. Even after we’ve given her all that we can give her, she still complains of pain. We have to decode what type of pain she’s having.

Sometimes, she’ll be anxious and trying to move about while complaining of back pain. That tells me she wants a position change, so we’d turn her to her side and prop up a pillow underneath her.

Sometimes, her diaper is itching her, so we just open it and readjust it, and that works. Sometimes she wants cream on her legs for dryness. Sometimes an eyelash went in her eye.

For all these things, she will complain of immense pain, get really anxious, and start calling everyone. Sometimes it’s hard to understand what exactly is causing her pain/discomfort. We’re still figuring out how to decode all this new stuff. It’ll get easier. It is already getting easier than what we initially anticipated this phase to be.

This month amidst of all of this we are supposed to be moving house soon. Packing should start sometime this week. No, we have not found a place yet. Yes, I’m panicking. Yes, it’ll all work out eventually. The plan is to move Mummy last, and have her room be the first one to set up at the new place, wherever that may be at this point….

Hopefully, once we move and get settled in the new place, maybe then the sense of normal will set in. I don’t know how these few weeks, months will pass. It could very well be that everything is calm and under control, or it could be that we’re freaking out and hyperventilating into paper bags.

We’ll just wait and see!

Mummy’s routine is now settled. She wakes up after at least a ten hour uninterrupted sleep thanks to a new medicine the doctors have given her. It’s medicine time and food time. In the morning, we normally feed her fruit yogurt and applesauce, followed by water. It is very important that she has water continuously. The nurse did say that her water intake needed to be increased, otherwise she would be at risk for dehydration again.

Usually around this time every morning, Papa and I have to change her diaper. By now, we’re used to it, it doesn’t gross us out anymore, and we do it efficiently. It still is a workout.

Lunch time, we feed Mummy a mix of lentils and rice (khichri). It’s light on her tummy, and it’s nutritious too. I try adding extra water to it to increase her water consumption. Then medicine time. She normally naps after medicine time because her medications calm her down.

When she wakes up, khichri again, or yogurt or fruit or applesauce again. Then medicine time. The only time she gets irritated is when we have to give her her medication, or change her diaper. She hates both. That’s when she might get angry and try and hold my arm away, or squeeze my fingers to show how angry she is but it usually passes.

Our main challenge right now is getting her to drink enough fluids. Food isn’t as important as water is. The last thing we need is her going back on IV. It’s uncomfortable for her, and it’s something that can be avoided if we just constantly try and get her to drink water.

As far as new deteriorations that are happening, every day something new is popping up. She sometimes does the opposite of what you ask her to do. If you ask her to open her mouth, she’ll sometimes close it. If you ask her to stick her tongue out, sometimes she sticks it in. And sometimes, when you ask her to swallow water, she spits it all out, in quite an impressive trajectile, might I add. Thankfully I wasn’t in the direct line of action, otherwise it would have been a direct hit.

She has also started talking to herself in her sleep. Before, she would talk to herself. Now, throughout her entire ten hour sleep, she is talking to herself. And during the day, even more so. Which also dehydrates her, so we have to be even more diligent with providing her with fluids.

She is becoming weaker, and she does cry a lot more. Everyday it becomes more apparent that these are indeed her last days. She is losing her appetite more and more as well.

We don’t know how long this phase will last, but what we do know is that 1) these last days of hers must pass as  comfortably as we can make it, and 2) whoever wishes to visit her, greet her and call her: this is the time.

There is no better time, because time is running out, and it’s better to live without regrets, than to spend time regretting. She can talk on the phone, afternoons are best. Visitors are encouraged to come as early as possible. We understand that everyone’s busy and with work, school, etc and it might be difficult. She usually goes to bed by 8, 9, or even 10 depending on the day, so it varies. Just communicate with us and we’ll let you know when is good.

She likes visitors, so it might cheer her up a bit.

Keep her and us in your duas. Also take this time as a reminder for yourself, and make dua for yourself in your old age, for your parents in their old age, and for everyone you care about in their old age. Aging is a reality not a myth, you don’t know what situation you will be in or your parents will be in when old age approaches.

May Allah protect us and those we care about from trials, tribulations, sickness, and sorrow, especially when we are old and weak, ameen.

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New phase

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!

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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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Rant: ON

Mummy has taken 2 mg of morphine in less than 12 hours, with 1 mg each time. Both times, she was yelling and screaming in pain, and both times happened after her diaper was changed.

Basically, whenever the nurses change her diaper, the position of her leg changes, and it causes her pain.

Last night, I called Anis and he came. He was here to help calm down the yelling, and calm her down. Within 20 minutes, she was passed out. Today I was by myself, and it took 40 minutes to calm her down after morphine was put through her IV.

I hope this doesn’t become routine. Change her diaper -> legs hurt -> yell from pain -> give her morphine. Because that would be pretty bad. Morphine is really strong.

Right after the nurse inserted the 1 mg into her IV Mummy felt nauseous. The nurse said sometimes it’s natural to feel like throwing up after having morphine.

I hope she doesn’t need it on a regular basis and that this is just a one-timer.

When she was yelling in pain, the circumstances of her condition became real to me. This was a human being in severe pain, begging everyone and anyone who would listen to relieve her from her pain.

The nurse asked me to ask Mummy, “On a scale of 1 to 10, ask her how much pain she has.”

It still amazes me how little some of the nurses here understand her disease. It’s so frustrating.

(warning: venting in progress)

Do you really expect someone with this stage of dementia to pause and critically examine the magnitude of their pain on a scale of 1 to 10????? How stupid are you??? If Mummy had even an ounce of strength, she’d smack you up the back of your head herself for asking such a dumb question.

She’s yelling from pain, she’s crying her eyes out, she doesn’t understand anything except the fact that she thinks she’s dying from pain…what does that tell you??? I can assure you, she’s not crying over a paper cut. She’s in real, un-filtered, hardcore pain. A couple of Tylenol’s won’t do the trick. She didn’t just hurt her finger playing soccer and get a boo-boo. Her legs are swollen, she can’t even bend them even if you asked nicely, and her catheter, although extremely necessary, is annoying the bejeezers out of her. She’s in an unfamiliar environment, with people she doesn’t know wiping her poop, and it doesn’t help that some of the nurses on the floor mockingly spray air freshener while laughing at how bad she smells. She has all this going on and you want her to pause and reflect on how severe her pain is? How loud does she have to yell for you to understand??

Stupid, freakin’, MORONS.

Done ranting. Good night.

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Sleep medicine

Before Mummy came to the hospital, she would take a nightly sleeping pill to help her sleep, otherwise she’d be up and everyone else would be up too.

When we got to the hospital, we made it clear that she needs this specific medicine called Stresnil every night otherwise sleep would be impossible.

Since the medicine is from India and it is a combination of a few medications combined, the hospital didn’t have it. So Papa had to give the hospital some from his own stash, and they sent it to the lab for testing. The Dr. approved it, and in the ICU they gave it to her every night (crushed and fed with applesauce).

When they moved her to a normal room night before last, it was not given to her (I didn’t know that at the time). No wonder her first night out of ICU was complete hell for both her and me. She would wake up every 2 hours between 1 am and 6 am, and then after that she didn’t sleep, for the rest of my shift.

Last night I talked to the nurse about giving her a sleeping pill, since Mummy was angry, freaking out, and not listening. I asked her if it was given to her already and she said no it wasn’t.

Um…hello?! She NEEDS this medication once, sometimes twice, sometimes thrice a day. What do you mean you haven’t given it to her??

The RN was clueless. After questioning her and trying to figure out the stresnil problem, she finally found out that her sleep medication was on the “in case of need” list, not routine daily medicine list. Are you kidding?? It’s as if these people don’t understand her disease at all. I told the nurse that Mummy’s Stresnil needs to be added to her routine medicines, so we’ll get that done today.

After giving Mummy her sleep meds, it took an hour and a half for it to kick in. After that it was smooth sailing. She slept from midnight to 8 am, waking up briefly only twice. She went to sleep after I told her that she shouldn’t talk, she should sleep.

Yesterday for some reason her catheter was ordered to be taken out. Without the catheter, she was holding in her urine and wouldn’t do it in the diaper. She was holding urine in her haider and she was just in a lot of pain because she didn’t know how to urinate. We asked that the Dr. order it back in, and as soon as it was placed in, it filled up right away. Half a liter of urine that she was holding! You can imagine how much pain she was in.

The doctor said a few more days in the hospital, so we’re not sure when she’ll be out. She wants to leave ASAP, she’s fed up with the hospital. We’re trying to calm her down and we’re hoping these few days her health really does improve.

Everyone at home has major bags under their eyes. Even though there’s a lot of us and we do take shifts, this whole process is very draining on everyone. We’re all sleep deprived and caffeine is very much a necessary part of our food chain. But we’re pulling through. Our family is very close knit and taking shifts and helping each other out when we can reduces the stress level immensely.

Keep us in your duas!

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New room

Mummy got moved out of the ICU. The move was slightly traumatic for mummy because she hates being moved around and put in a new environment. She had just gotten used to the ICU.

Medicine time is every 4 hours or so, and it is not easy. Just now, she forgot how to swallow. She just held it in her mouth for a long time, and then when we asked her a question thinking it had gone in, half of it just fell out. I kept telling her to swallow it, she kept asking me,”How? Do it for me!” More medicine came out of her mouth. I’m not even sure how much of it went down.

Since Mummy has severe diarrhea, she has no control over it. They come and clean her every 2 hours. When her sleep is interrupted by painful turns to her side, she gets very agitated and anxious.

She keeps asking when she’s going home. She says, “Ok, get up, let’s go, let’s leave, we’re leaving.” I have to gently explain that we can’t do that, but it doesn’t work like that.

She’s still pretty weak. She needs to recover for a bit more before we can go home.

It’s 6:30 am and she fell asleep again, after talking about how quickly we have to go home. She probably just got tired.

Not sure how much longer she will stay in the hospital, or how her care will be more challenging after this….but that’s too much for my sleep-deprived brain to figure out right now. We’ll deal with all that when we have to. Right now, let’s focus on getting her healthy. The pieces will fall into place after that.

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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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