Posts Tagged stroke

Eid

It was Eid Al Adha few weeks ago. Eid is one of the two major Islamic holidays. On the last Eid, though mom was sick, she was still able to come to the prayers and actually had a great time. We dressed her up and she loved the visitors. This time, she was on her bed, as usual. I told her its Eid and she smiled, which is rare. I was sitting in her room, just staring at her. She looked at me and said, “whats wrong? you  look little down”. I was down, it was Eid and mom has always been the host. She would make her special sweets and breakfast. Our neighbors and family would come over for breakfast. It would just be awesome. Not this time. Tears rolled down my cheek and I looked away from her, so she can’t see me cry, and I said “nothing, I am good”. She said ” I know everything”, tearing up.

I have never written this and I don’t really know why.But every time I pass by mom’s room, I look at her and check if her diaphragm is moving to make sure she is still breathing. We all do it..

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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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Wheel Chair

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.

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Despair

The most difficult part of dementia or any other mental disorder that happens is not the physical limitations that come with it, but the emotional and mental stress caused by it on the patient and the ones near.  The absolute worst thing that caregiver can do is let this despair over take him or her. The emotional burden can get over whelming but to give up is not an option. Symptoms will change, moods will swing, sentences will make no sense, you will be told that fabric is hurting, and at times things will get batter for a bit and then deteriorate faster than expected; but that is the nature of this disease and only option is to cope with it and keep your chin up.

Breaks are an absolute must. The caregiver must get breaks, it could be small as watching a movie, or cooking  to going away for couple of days. Though the luxury of going away is not available to most people, as the patient will always look for the primary care giver. Support from family and friends is always welcome. Let me give you all some pointers on visiting someone suffering from Dementia or Alzheimer. One thing I can not emphasize enough is how much it helps when a visitor comes, so go and visit them. When you visit, visit with a jolly positive attitude, make them smile or laugh; don’t just come and visit and be awkward! Secondly, see if you can be of help when you visit, but not intrusive, the caregivers are used to taking care and they usually have a setup and process.   Make the visit as normal as possible, there is not real reason to ask too many questions and the most importantly, the care givers have the most experience in dealing with that particular patient and they know the best, so unless you are a doctor please refrain from giving constant unsolicited advises or doing “normal” things to or for the patient. This usually messes up with the care cycle.

One example of this kind of behavior was when we went to San Diego to visit one of my cousins. After lunch, mom had already had her water and dessert.  Even after informing people there that she doesn’t need anything else, someone came with a full big cup of water and gave it to mom. Mom drank the whole thing (It’s usually the case, what ever amount of food or water is given to her, she finishes it all).  For a normal person this is most likely not a problem, but for us it became a big problem. I tried to take mom to the bathroom before our drive back but it was an unsuccessful attempt. I took her to the bathroom specifically because she was given that big cup of water. The trip back  to our house was just over and hour and fifteen minutes.  After about 40 minutes on the road, mom said she needs to use the bathroom. This was a big problem because it is very difficult for her to use a public restroom as it causes confusion, the lack of cleanliness increases the chances of infections such as Urinary Tract Infection (UTI). I asked her if she could hold it for a bit, she said yes. But by the time we got home, she was in a lot of pain to the point that it was tough for her to walk straight.  Not fun.

 

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New symptoms

As Mummy’s disease progresses, we are starting to see more and more symptoms and new things that she’s doing. Almost every few days now, something new comes up, in addition to everything else that she had. This makes things slightly more difficult to manage.

This week showed us a few more symptoms than we would like to see. For one, she can’t swallow medicine quite as easily any more. Even if we cut the pill in half, it doesn’t work. She can’t swallow Tylenol anymore. Tylenol! Of all things. She just took Tylenol like a few days ago. As of yesterday, she couldn’t swallow it.

Another thing that has changed this week is her mobility. She needs someone holding her while she walks, and little things she used to be able to do before are slowly becoming harder to do. Standing straight by herself without any support from anything or anyone is one of them.

We have now decided that she can’t walk unassisted and she needs a walker. Walking from her bed to her bathroom is slightly difficult for her now. She is just constantly wobbling and unstable, and her legs shake trying to support her weight. She’s not a heavy person or overweight by any means, her knees are just extremely weak.

Papa says she has developed arthritis in her knees and joints. This adds additional challenges. Things like taking her to the bathroom, giving her a shower, changing her clothes, getting her in the car, are slowly and steadily becoming harder to do.

We can’t give her arthritis medicine because she can’t swallow it. If she doesn’t swallow it, her joints will hurt. If her joints hurt, we have to give her medicine. Catch 22.

This week hasn’t been that great in terms of Mummy’s health and progress. Her depression is slowly creeping back, she is complaining of aches and pains again, and she rarely is smiling or laughing now. Her irritability is there in small doses,  and her OCD is in full swing again.

Not sure what’s going on, maybe the medicine has no effect on her anymore. A talk with her Dr. is due. We hope she doesn’t go back to how she was at her worst, crying all day, too depressed to eat or do anything, angry all the time. HOPEFULLY this is just a small phase, it’ll pass.

Anis told me a few days ago that our outlook on this is “too positive”. Maybe we are being too positive about this whole situation. But, honestly, I’d rather be optimistic about this disease than be pessimistic about it. Maybe our optimism is our way of dealing with this and it’s our coping mechanism.

Realistically, we probably are setting ourselves up for disappointment every time she takes a step or two back. But, for the sake of our sanity, if we’re not positive about this, it’ll swallow us both into deep depression and sadness.

Realistically, she probably won’t get better. Realistically, she will probably get way worse than we think she is now. Realistically, actions like eating and swallowing food won’t be intuitive anymore, we will probably have to explain to her how to swallow and how to chew. But if we constantly think about that, how emotionally unstable would we become?

This disease doesn’t have a happy ending. Its ending is depressing, sad, and negative. If we constantly think about how much worse this is going to get, our already high stress level would shoot through the roof. I don’t think that’s a good way of dealing with this at all. We need to stay positive so that she stays positive. We need to stay positive so that Papa stays positive. If we’re not the solid rocks, they won’t be able to depend on us. If we’re not stable and strong, how can we expect them to be?

I don’t think there is any other way to deal with this disease than be positive. I’m not saying we’re not being realistic. We are fully aware of how bad this disease can progress, and we are fully aware that there is a high probability that Mummy’s disease WILL reach that level.

But somewhere in there, there’s a small probability that we will manage this disease well, and it won’t progress further. If thinking about that slim, small, minuscule possibility is what gets us through this, then I don’t see a problem with that.

Our faith teaches us to be positive, in ALL situations. Positivity breeds positivity. And that’s the best we can do.

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