November 16, 2011

Living With My Mother's Dementia - Part 2

Anis Hoda is an Indian-American living in California, USA. He is the youngest of three children and works as an Energy Engineer. Since 2010, he has been living with and caring for his mother who suffers from Vascular Dementia. This interview is a continuation of interviews conducted with his family (see Living With My Mother's Dementia Part 1about his mother's condition. These interviews were conducted to help raise awareness about this disease and it's symptoms. May Allah make it of benefit, ameen. 

1. What do you remember most about your mother before her dementia?
My mother was fiercely independent. She has a PhD in organic chemistry and had been working as Head of Chemistry department when she retired in 2008. She has been supporting the family always. Before she got married she used to work as a teacher and help provide for her parents and siblings as her father was ill for a while and income was very limited. After she got married she was selected for a Chemistry teaching position in the university she retired from.

My mother was very well known and well respected. Whether its politicians or high ranking officials, everybody knew her for her work. The locals in the area knew her mostly as baji” which means elder sister in Urdu, a sign of respect. My mom was whom the mostly poor locals depended on for extra cash, or Eid clothes, or daughters’ marriage help.  She had a little school in her house where she would teach these poor little girls, daughters of the maids and garbage collectors. She would not come and stay with me in US because she felt guilty that if she did, who would teach those girls, who would make sure that the neighboring locals had blankets this winter?

Once, I was visiting my mother in 2010 in India, her disease had already started then and taken a big toll on her by now, and while my mother was asleep this girl came in with a little baby asking for baji.  Not understanding what was going on, or what she needed, I told her to come back later. She came back about an hour later and met mom. She complained of headache and wanted some medicine. I was awestruck by the first question mom asked her. She asked “When did you eat last?” The girl replied, “I cooked two days ago.” Mom gave her some food to eat and some medicine. She then gave her some money after which the girl left. I asked mom, “what about the child?” Mom said “Oh! The local milk store has already been paid for the whole month to provide milk for her child.” This happened every month for God knows how many children.

When I was bringing my mother over to US this last time, her disease had progressed a lot. While we were leaving there was this crowd of people crying to say goodbye to their “baji”. Religion did not play a role; Muslims and Hindus all came to see off “baji”. Even while she was sick she kept on telling me to give some money to everyone who was there.

This was the kind of work her whole salary was used for. My dad made enough to save and run the house. Mom’s salary was for others.  Her charity is what I remember most and I am sure so do the people whom she helped. The list is countless.

2. What is Vascular Dementia? How is it diagnosed and treated?
Vascular Dementia is a “sister” disease of Alzheimer’s. It leads to loss of brain functions and affects memory, thinking, language, judgment and behavior. Vascular dementia happens due to many small strokes which keep making the brain smaller and smaller. 

There are no treatments for this disease yet.  The diagnosis is usually done by analyzing the behavioral changes and can be confirmed by brains scans such as MRI.

3. When and how did your mother’s dementia develop? 
Though we do not know exactly when mom’s dementia started, we think it began after my parents performed hajj in 2006. It accelerated after she retired in 2008 and had a formal diagnosis in 2010.

Mom has complained of headaches always. Now that we look back on it, it is very much possible that those were microscopic strokes that were slowly killing her brain cells.

4. What has life living with and caring for your mother been like since her disease began?
I have lived on my own since I was 17. I have lived in different cities and moved to a completely new country. At times it was a lot of handle. But it has never been this tough. This is the most difficult part of my life yet. It’s not because it’s physically draining, but the mental effect of it all. Watching my mother suffer, change, misbehave, and get hurt because of this disease has been the hardest part of it all.

It has affected my marriage. Even though Mariam has been absolutely great about all this and very cooperative, it still has affected us, both negatively and positively.

5. What impact has the disease had on your mother’s character, behavior, abilities, and outlook on life?
This disease can completely change a person and that’s what it has done to my mother. Her personality did a complete 180. She gets agitated a lot faster, there has been cussing, extreme anger, even hitting. There are also certain signs of depression.

6. What impact has this experience had on your family?
It has completely overwhelmed us. We have no idea how to deal with it and that fact has brought the real colors out of us all. We have learned new things about each other and learned what we can and can’t deal with.

7. How do you cope with the mental, emotional, and physical stresses of caring for your mother?
I don’t. There is no way to cope with this. We all try to give each other a break for some time to stay sane. I go to work during the day. When I get home, Mariam will go to her friends or I will take my dad out to watch a movie. There is no way to cope. There are only ways to escape for a bit.

8. From where do you and your family seek strength in this situation?
Allah (swt) is perfectly Just. He is also completely in control of any situation and is fully aware of what my mother is going through and the effects it has on us. The strength comes from the simple belief that Allah knows what’s best. Allah is aware of the situation and it is just a test for us.

In Surah Al Inshirah (Chapter 94 verse 5-6), Allah says: “So verily, with hardship, there is relief. (5) Verily with hardship, there is relief (6).” This is sufficient. Not too many people get the chance to care for their ailing parents. It’s tough, but I would rather do it than not.

9. On your blog, you talk about “it” approaching. Can you please tell our readers, what is “it”? How do you know that “it” is on its way and how are you preparing yourself for its arrival?
“It” refers to the imminent visit by the Angel of Death. It is very clear looking at my mother’s constantly deteriorating condition that it can happen any time. Though it can happen any time for any of us, but for her I can see it slowly coming.

I don’t think I can really prepare for it. We have made all the arrangements and plans on what to do when something happens but there is no preparation that can be enough. I have been trying to make myself tough to go through it but it’s not really working.

10. How has this experience brought you closer to Allah?
This disease or similar diseases show the reality of our meager existence. A woman with PhD, who wrote thesis and taught others for 30 years of her life can’t even tell you how many kids she has anymore. It confirms the fact that our existence is only out of the mercy of Allah. Our existence is meaningless, if not for Allah and if we have no legacy to leave behind.

11. What has this experience taught you about being a son or daughter in Islam?
You only get one set of parents. Everything and everyone is secondary. It’s easy to turn away; it’s easy to escape. It’s not easy to try to return even a percentage of what your parents did for you.

12. How can others learn more about Vascular Dementia, recognize its symptoms and seek help for themselves or someone they know?
There are numerous websites that talk about it. It is imperative that we ourselves try to recognize changes in our working capacity. It is also extremely important for family and friends to notice and note down the changes. Some of the things to notice are:

Change in eating habits
Headaches (try to pinpoint the cause of head ache, like dehydration, etc)
Personality changes
Increase in forgetfulness
Change in cognitive skills

There is not too much actual study on this family of disease and that was one of the reasons why we started this blog. Documentation is a very important. I think others should start documenting their experiences and publish it.

Some websites that are beneficial are:

13. Is there anything else you would like to add?
Make dua’ inshaAllah for my mother’s life here and her life afterwards to be easy. Make dua’ that her suffering washes her of all her sins. And make dua’ that this be our reason for jannah inshaAllah.

To stay updated in his mother's condition, visit Mariam and Anis' blog, My Mother and I

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