Posts Tagged vascular dementia
I have decided that I will not post anymore after this last post. I have kept myself busy this week after returning to work on Monday to an extremely supportive co-workers, with the hope that slowly life will be back to a normal. A new normal that is, a normal without mom. It can’t ever be the same normal, where I could smell her, poke my nose play fully in her face and watch her laugh. I can’t ever touch her again or hear her call me to come sit with her. I was craving something sweet and went to raid the fridge. I saw apple sauce and without thinking took a cup out. Just when I got the spoon, it hit me that during the last stages, we used to crush pills and give it to mom with apple sauce, a trick hospital nurse showed us. Couple of cups had remained. I miss her. Small things make us miss her more, whether its visiting the Chinese resturant and eating walnut shrimp or making carne asada tacos.
Mom passed away early morning on Monday, November 28th, 2011. We were all with her, when she gasped for last breath and her soul left. The breathing rate had been slowing down a lot and there was no pulse for about an hour before that. She started to have gaps in her breathing which kept on getting bigger and finally, it stopped. Papa checked her heart with his stethoscope which she was still breathing with gaps but there was no beat. After, her last breath, I checked it. There was silence, a loud silence. Islamically, the body is to be buried as soon as possible. Since, we had already planned things, we were able to do the burial same day, later in the afternoon. Mariam, my sister and few other relatives gave mom her final bath. We prayed over her body, the final prayer of burial at the local mosque before proceeding to the cemetery. I got down in the grave along with my brother and two other close relatives to lay the body down. I was the last one out. I made her slant a bit to her right, so that she would face Kaaba in Mecca. She was buried without a coffin, wrapped in white sheets. When I was moving mud around her body, my hand touched her face and could feel her nose. That was the last time I touched my mother. Soon afterwards, she was under piles of mud, on her way to eternity. After, her washing, I saw her at the mortuary and she looked as if she was smiling , a slight smile, peaceful face and at ease. Its been a while since, we saw her without pain.
The support from our friends and family was over whelming. I can’t imagine anything better. Many of mine and Mariam’s friends dropped everything, took the day off work and came over to be by our side. They took care of kids, made arrangements for “A’zza” or the reception for people to meet family and give condolence. The numerous hugs and words of encouragement, teary eyes of these macho friends of mine, it all just over took us. One of my best friends dad saw me at the Masjid, gave me a hug and started crying. I had to console him! I met mothers of four of my closest friends, all of them crying. These people whom I am not related to by blood were crying for my pain. They were crying because they are related to me by faith and by humanity. We do not know how to repay them.
And Thank you all for your support and for sharing our journey.
Many of those who called from all over the world could not believe that mom was no more. They broke into tears and some just cried and hung up. The couldn’t talk. Baji was gone. Who would go around in the middle cold nights with blankets and give out to the people sleeping in the cold on the streets of our home town in India,, who would stop us from killing even a bee, Who is going to make sure, the baby of the girl who lives near our house gets milk, who is going to teach the neighborhood girls. The list goes on and the void gets bigger.
If I was asked to summarize mom’s legacy, it would most certainly be of charity and simplicity. She lived a simple life with minimal needs and wishes. What she had, was for others, she would always be giving. To help was her nature, it would melt her heart to see someone suffer. We have gotten quite a few emails from people who have benefited from this blog. Her disease, her pain became a tool for her to help others. She lives on in our hearts and hearts of many for reasons we would never know. She is her legacy, even in death.
So long Amma… Inshallah will see you in Jannah.
Wassalam Alaikum Warahmatullahi Wabarakatu
(May Peace, Mercy and Blessings of Allah be on you)
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!
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.
The neurologist called yesterday. Mummy’s MRI report came back. He said there is no sign of any new strokes, just the previous stroke that she had some time earlier this year. He also said her brain is shrinking.
So at this point, we’re not sure why she has deteriorated all of a sudden. Stroke is ruled out. What else can it be? We have no clue.
Mummy has been getting depressed lately. She’ll cry every once in a while about how bad her health is.
Yesterday, after eating lunch, she cried because she said no one cares for her or feeds her. I asked her if she wanted real food, or if she wanted ice cream. In between whimpers she let me know she wanted ice cream. As soon as I gave her some vanilla ice cream (her favorite), she got up and ate it enthusiastically. She calmed down after that.
Her pain complaints have gone back up as well. She is complaining of pain everywhere. Her joints and her muscles ache. Papa tried explaining there’s not much we can do about it. A Tylenol or an Advil, maybe, but that’s about it. He tried telling her that this comes with the territory of growing old. Obviously, Mummy didn’t understand. Rationale and logic aren’t the best ways of solving her problems. Sometimes she just needs verbal reassurance that everything will be alright.
Explaining to her WHY she’s having pain won’t stop her from complaining about her pain. Showing her that you’re doing something about it, even if it’s pretend, for example, rubbing lotion on the place of pain, or giving her a multi-vitamin and saying that it is knee medication usually works.
As Muslims, we believe that the difficulties, sadness, hurt, and pain that happens to us cleanses us of our sins. In a hadith (teachings said or done by the Prophet, peace be upon him) the Prophet Muhammad (pbuh) said, “No fatigue, nor disease, nor sorrow, nor sadness, nor hurt, nor distress befalls a Muslim, even if it were the prick he receives from a thorn, but that Allah expiates some of his sins for that.” [Bukhari]
Applying this to Mummy’s situation, we can understand that Mummy’s sins are basically being washed away because of this disease that has befallen her.
The test isn’t on her, it’s on us. This disease might lead her to paradise, but will it lead us to paradise? If we lose our patience one day, or get angry the next day, or even worse, question Our Lord’s Will by saying, “Why me?” will that lead us to paradise?
Our test is whether or not we keep our patience, remain calm, rational, and focused on the bigger picture. It can be extremely easy to lose patience with a person with dementia/Alzheimer’s. Things that they have OCD about can drive any sane person to the brink of insanity.
But how we react under pressure is the ultimate test of character. It’s not about how we appear in public or in front of others, or how outsiders view us. It’s about how our character shines through when faced with difficulties within our home, with our families. It’s about how we treat our weak, our sick, and our old when it’s just us, no outside people looking.
Patience may be the LAST thing we want to practice. But patience is what will save us in the Hereafter. It would be very unfortunate to put all this effort into being a caregiver for a disabled person, only to have this be the reason of our demise in the Hereafter. If we’re going to put all this effort, we must make sure that these deeds will be accepted, and that we do things right.
Patience is needed in abundant form. Even if you are annoyed, irritable, or angry, it is the ultimate test of your character when you can project an aura of calm despite of the emotions going on inside of you. As hard is it is to care for a person with this disease, as a Muslim, the true test of faith is whether or not we keep our eyes focused on the Hereafter, with our hearts remembering Allah and fearing Him.
To all people dealing with dementia/Alzheimer’s: What might seem like a calamity that has come upon you, could be a blessing in disguise, or it could be the one thing that brings down Allah’s disfavor upon you. This could be the one deed that tips the scales on the Day of Judgement, either for better, or for worse.
It is a decision that we make with our actions.
The real question is: How will our actions (i.e. our family) speak for us on the Day of Reckoning?
I guess we’ll find out then…
Mom’s movements have become much more limited now. It hard for her to walk to the bathroom and for her legs to support her weight. This is another new symptom.
When mom used to teach at her university, she was also heavily involved in the administration of the college. She would visit the government offices, dealing with salary structures, admissions etc. Her college and most of these offices were not on the major street which meant she walked, more than couple of miles a day easily for almost as far as I can remember. It’s about 20 steps to the bathroom from the couch in living room where she likes to sit all day. She can’t walk that now.
We are still getting used to the wheel chair. It was a tiring trial when Mariam and Papa took Mom for her MRI. Mariam called me after coming back home from MRI and yelled all about the problem she and Papa had and how they both argued on how to handle the wheel chair. After couple of minutes of shouting , she said “ok I am done.. bye”. I called few minutes later to see how things were at home and seemed everything was status quo.
Its status quo now, not normal.