Living With My Mother's Dementia - Part 1

Mariam Tohamy is a half Egyptian, half Pakistani sister living in California, USA. Since November 2010 she has been living with and caring for her mother-in-law who suffers from Vascular Dementia. Please note this interview is not being published to exploit a sensitive situation, but to help others who have friends or family members suffering from the disease. Vascular Dementia does not have a cure and it is only by sharing stories of patient experiences that people can begin to track patterns of symptoms and make proper diagnoses early on. May Allah make this of benefit, ameen.

1. What do you remember most about your mother before her dementia?

She had a very strong personality. She was highly educated, and encouraged further study and/or jobs.

2. What is Vascular Dementia? How is it diagnosed and treated?

Vascular Dementia is basically brain damage caused by restricted blood flow to the brain. There are several ways to diagnose it. Mummy’s Vascular Dementia was diagnosed clinically with a neurological exam. He basically checked her balance, coordination, etc. and concluded that she has Vascular Dementia. There are a few drugs available on the market to slow the progression of the disease, but Mummy’s dementia was diagnosed relatively later on, so a lot of the drugs didn’t have much of an effect.

3. When and how did your mother’s dementia develop?

Officially, she was first diagnosed in mid-2010. But we had an inkling that she had it a few years before the official diagnosis. She started forgetting things. By the time I came into the family two and a half years ago, she would forget what prayer it was time for. I remember Papa continuously having to write it down for her. She would also forget how many rak’as in each prayer. We had to tell her Asr was four rak’as, maghrib was 3, etc.

4. What has life living with and caring for your mother been like since her disease began?

Extremely stressful. Since Mummy was living with us for the majority of her disease, we’ve seen the progression from the early stages until now, her final stages. Since it began, we’ve slowly had to withdraw from our social activities and commitments, and spend more time at home. Anis (Mariam's husband) withdrew from practically every extra-curricular activity to stay home with his Mom and care for her.

In terms of her physical care, it’s been a slow progression, unlike her mental deterioration. Up until recently, she could eat on her own. In January of this year, I remember she could go to the bathroom all by herself. She went with Papa to India in February and came back in May. Since May, she has needed assistance going to the bathroom. After Eid-al-Fitr this year, she needed assistance walking, and as of a couple of weeks ago, she now needs assistance eating.

5. What impact has the disease had on your mother’s character, behavior, abilities, and outlook on life?

This disease has made her confidence shoot down. She used to be an extremely confident and capable person, able to do anything she wanted to do. Her personality is less dominant than it used to be, and her depression has increased immensely. She sees herself as someone who has fallen from a high pedestal, and keeps lamenting about how her state is now. She has a Ph.D. in Organic Chemistry, and her thesis is a book an inch thick. She was the Head of the Chemistry Department at a college in India. Now when you ask her to write the alphabet on a paper, she just draws vertical lines. She can’t even count anymore, and cannot even count how many brothers and sisters she has.  

6. What impact has this experience had on your family?

In terms of Anis’s siblings and him, it has brought them closer, since his parents primarily live with us and they call and visit frequently to see Mummy. In terms of stress level, let’s just say that Anis has more gray hairs now than he ever did when we got married two and a half years ago. This experience is aging us faster than we would like because of the amount of stress that we are under. 

Dementia comes with Obsessive Compulsive Disorder, anxiety disorder, bi-polar disorder, and severe depression. It’s very, very difficult to deal with someone who is anxious, angry, crying, and depressed all day. To go from a normal, happy family experience to one where everyone is stressed/depressed on some level really brings us down.

7. How do you cope with the mental, emotional, and physical stresses of caring for your mother?

The stresses are extremely high. Anis and I try and individually go out with our friends once in a while. Hanging out and chilling with our minds free from worries for a few hours gives us a little bit of a battery recharge. Sometimes, we hold it inside, and it just boils over into tension between Anis and me. That’s when we know we need to de-stress, and one of us goes out to hang out with friends for a while.  

8. From where do you and your family seek strength in this situation?

Alhamdulillah, our friends, family, and community have been extremely supportive. Even if we don’t seek out help, it’s good to know that help is there when/if we need it. For me personally, my close circle of friends has helped me through this. Same with Anis. We each have a close circle of buddies that we fall back on when we need a break.

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?

The “it” that we refer to on our blog is death. Mummy’s health has deteriorated so much to the point where it would be un-wise to not talk about and discuss the action plan in the case of her death. Logistically, emotionally, mentally, we need to be prepared. We’re already under a lot of stress, and if we’re not prepared for something like that, it will be very hard to recover from it after it happens. Her doctor has given her an official prognosis of less than six months, but we know that it could be more than that or less than that. We’re not banking on that official figure, but we need to be prepared for it. Slowly and steadily, her mind is losing more and more control over her body. She’s succumbing to the pain a lot more than she was before, she’s eating less, drinking less, willing to do less and less.

We are preparing for it in a number of ways. First, we have to make sure that the rest of Anis’s siblings are fully aware that death is approaching soon. Anis always says to them, “Whatever good deeds that you can do now, do it. Your time for earning good deeds by serving your mother is running out. It’s either now or never.” We are also preparing her for it medically as well. We have stopped giving her the dementia medications, because of the side effects. She’s only taking medications for pain and anxiety at this point. Since her dementia is so advanced, there’s no point in giving her the medication for it.

10. How has this experience brought you closer to Allah?

For one, we take it as a blessing from Allah that we are allowed to serve our parents. A lot of people don’t get a chance to be with their mothers or fathers in their last days, so it’s a mercy upon us that we can be with her in her last days.

11. What has this experience taught you about being a son or daughter in Islam?

It has taught us that you never know what condition your parents will be in when they are old, but whatever it is, you have to be there for them. Even if some things might seem gross, or disgusting, they have done that for us, and we should be ready to do whatever we can do for them.

12. How can others learn more about Vascular Dementia, recognize its symptoms and seek help for themselves or someone they know?

Since it can happen earlier than you think it can, it’s very important to get tested, checked, and up to date with all your tests and to know everything about your medical situation. Some people avoid being tested or checked for things like cholesterol, diabetes, etc… out of fear of knowing the result. What they don’t realize is that it is better to know and control it, than to wake up one day and suffer from it in its end stages.

As far as the symptoms of Vascular Dementia go, in Mummy’s case it started out as confusion and forgetfulness. There are many types of dementia, so it’s best to research it online and speak with professionals about the different symptoms. The best thing to do is to get yourself (if you suspect you have it) or someone you know checked by a neurologist.  

13. Is there anything else you would like to add?

I initially responded to these questions a couple of weeks ago. Since then, Mummy has deteriorated even further. She has now stopped eating. She doesn’t know how to open and close her mouth. When we ask her to open her mouth so that we can put food in, she just says she doesn’t understand, or she doesn’t know how. We try and feed her through a cup instead, telling her it’s water that she should drink. Sometimes she understands better that way. 

We have stopped giving her pain medication, she no longer complains of pain. Actually, she no longer complains at all. She has stopped talking, and constantly has a serene look on her face. The Dr. has advised us that “it” is nearer than we think. Her condition deteriorates more and more literally every two days. First she couldn’t chew. Then she couldn’t swallow. Now she can’t open her mouth. She has stopped talking for the most part, and doesn’t call out for anyone anymore. It’s going so fast, and planning for things at the end of the week seems like such a big question mark. 

Keep her and our family in your du’aa.

To stay up-to-date on Mariam's mother's situation, visit their blog My Mother and I