Anyone with experience on how to deal with a parent who is extremely unwell?

[Savak]

It is really nerve wracking to see one's parents become extremely unwell and deteriorating rapidly with each and every passing second.

My mother was an extremely proud, ambitious, determined, steadfast woman who rose to the top of her career, profession and single handedly looked after us as a father when my father was travelling outside for work 3 weeks every month. She rose to the top of her gynaecology dept in the govt department she used to work in back home in Pakistan and also did 3-4 private clinics and a few teaching positions as well as keeping an eye on us at home. Working in a Pakistani govt hospital is really hard especially dealing with corrupt PPP politicians who have taken over all govt institutions in Sindh and totally destroyed everything.

While Me and my dad moved to Canada 6-7 years ago, my mother and my baby sister didn't move because she wanted her to do medicine in one of the top medical schools in Pakistan as she believed it would be a much better option rather than doing medicine in medical school in Canada or the US. But trust me, living a split family life has huge ramifications between spouses and no matter how loving and understanding they are, it takes a toll where both spouses feel the other doesn't understand each other or communicate or show patience with each other. Heck the one consequence of me living all by myself mostly on my own in the last 7 years is that I myself don't have the patience to live with people and prefer solitude most of the times.

My mother finally had enough and retired for good a year ago once my sister finished medical school in Pakistan and she finally wanted all of us to start living as a family again. She was unhappy about living in Canada knowing that living in the West will be a totally different ball game to living in the comforts of Pakistan but she was like its not an option.

Unfortunately things have just gotten worse, a year and a half ago my mother was diagnosed with Parkinson's but it is incredibly shocking to see how rapidly the whole symptoms have spread. It's gotten so bad now, she can no longer eat properly, she can't walk unassisted, she feels dizzy and hazy a lot, can't move her neck and her speech has become slurred.

My dad travels a lot, three weeks in a month for work, I work for an accounting firm and my hours are very brutal where I am either working 10-12 hours a day or studying for exams. My baby sister quite her job recently so that she could focus on her USMLE exams in the US and while she is at home most of the times to take care of our mom, she is getting married by the summer of next year and will not be around for ever.

It is just frightening to see how much help my mother needs. My daadi is 86 years old where she has health issues of her own but even she commented that atleast I can lift things and eat properly and efficiently if I want too.

We have been pressing mom to agree to let us hire a helper who can help her out with doing house chores and a caregiver but she is so far refusing. Although something like this should not be said for ones parents but it is proving to be very impossible having to live in the West and to take care of someone who needs full time care and both me and my dad can't quit our jobs either.

Last night my dad told my mom pointblank that she has got to accept help from a full time care giver. My mom is still refusing and even emotionally blackmailed that if we impose a caregiver on her then she would rather go back home to Pakistan where the cost of hiring help is much cheaper.

Anyways I thought I would ask people over here if they have had any experience or issues with this especially in the West. Me and my dad have tried our best, but practically speaking we can only be able to watch her full time over the weekends but it is not possible forever.

My dad was in favour of telling the rest of the family members about her deteriorating condition so that people would have a better understanding and would try to help make her comfortable as much as possible but my mom was against it saying that people will spread things and any future parent or girl they try to pursue for me will be put off by an unwell mother in law.

Looking forward to people sharing their opinions, experiences and practical suggestions

 

[ElRaja]

i feel for you bro, we spend all our lives with our parents looking out for us it is unnerving when the tables are reversed. i think eventually if you cant watch over her adequately you must get someone in, as people get older they become super resistant to change, and this is no different to young kids, as a parent enforces their will for the betterment of the kids, so must the kids when they are responsible for their parents well being imo.

the fact that your father is supporting it is good, id say best course of action is to slowly introduce a carer, from maybe a day a week, once your mother becomes more comfortable with having an outsider in the house she will ease up to the idea.

best of luck mate

 

[faraz39]

Sorry to hear Savak. Good on you for being a good son and trying to find solutions for your mom's health. Make lots of dua for her and a gradual introduction of a carer is likely the best option.

 

[gazza619]

I pray to Almighty Allah to give your mother good health and give you all strength to deal with this. The way I see it bro, you have a few possible options. Get married to someone who will be willing to help you and your mother in this tough time. This will create an unbreakable bond between you and your wife too (provided she is willing to help). The second option is to get a helper.

I am an accountant myself and if your firm are regularly making you work 10-12 hours a day whilst you are training then you should really look to change your employer. There are thousands of jobs out there.

Bro life is too short, you need time for yourself and your family too which cant be possible with mad working hours.

 

[Eagle_Eye]

My mother is in her 80s, has Alzheimer's. Initially we thought we could manage on our own as mum didn't want anybody other than her kids to be with her. Its extremely tough, you will need to get professional help as symptoms worsen .Get carer to come in and help out atleast during the day. That's we had to do.

 

[Savak]

I pray to Almighty Allah to give your mother good health and give you all strength to deal with this. The way I see it bro, you have a few possible options. Get married to someone who will be willing to help you and your mother in this tough time. This will create an unbreakable bond between you and your wife too (provided she is willing to help). The second option is to get a helper.

I am an accountant myself and if your firm are regularly making you work 10-12 hours a day whilst you are training then you should really look to change your employer. There are thousands of jobs out there.

Bro life is too short, you need time for yourself and your family too which cant be possible with mad working hours.

The problem is for individuals who have dependents who need 24/7 care, these people cannot go out and work for employers, doing something from home to earn is the best bet. My chacha runs his own engineering consulting firm from home in the US and it was vital for him to do that because his son is severely autistic and severely dependent on him.

 

[Bosanquet]

This is a very difficult situation & you have my full sympathies.
I do have a fair bit of experience - personal & professional.

The first thing that strikes me is medical. Parkinson's usually progresses slowly & can usually be well controlled by correct medications & physiotherapy. I hope your mother is under the care of a Parkinson's disease specialist (or a neurologist with an interest in movement disorders) and not just a GP. Does the department she is under have a Parkinson's disease nurse who can visit her at home or use tele-medicine to provide quick support? Does she have access to a physiotherapy unit? Are her tablets reviewed regularly? Sounds like they are not particularly effective & need to be reviewed asap.

As for social support & help at home, have you considered getting someone over from your homeland to help your mother for a few months? This would serve to demonstrate to her that she needs help. There-after she may be more amenable to long term help. Of course if improved medical therapy gets her mobile again,then the picture changes for the better.

Finally - and this one is particularly difficult for Asian people - she may be suffering from depression due to the circumstances in which she finds herself. That would make her physical symptoms worse. Consider consulting a psychiatrist.

Good luck.

 

[Varun]

Sorry to hear that.

Hope your family finds it easier in the weeks and months ahead.

 

[Arham_PakFan]

Sorry to hear about your mum's situation. Hopefully she gets well soon.

 

[UP]

Perhaps slowly introduce caregiver?

 

[Savak]

This is a very difficult situation & you have my full sympathies.
I do have a fair bit of experience - personal & professional.

The first thing that strikes me is medical. Parkinson's usually progresses slowly & can usually be well controlled by correct medications & physiotherapy. I hope your mother is under the care of a Parkinson's disease specialist (or a neurologist with an interest in movement disorders) and not just a GP. Does the department she is under have a Parkinson's disease nurse who can visit her at home or use tele-medicine to provide quick support? Does she have access to a physiotherapy unit? Are her tablets reviewed regularly? Sounds like they are not particularly effective & need to be reviewed asap.

As for social support & help at home, have you considered getting someone over from your homeland to help your mother for a few months? This would serve to demonstrate to her that she needs help. There-after she may be more amenable to long term help. Of course if improved medical therapy gets her mobile again,then the picture changes for the better.

Finally - and this one is particularly difficult for Asian people - she may be suffering from depression due to the circumstances in which she finds herself. That would make her physical symptoms worse. Consider consulting a psychiatrist.

Good luck.

Actually my parents have not revealed or disclosed to us the kids and family members about what she is suffering from. But we are using our own judgement and looking at the symptoms, it is obvious that this is Parkinson's. I have discussed her case with a few doctor friends of mine and they are off the opinion that usually Parkinson cases do not show such a rapid decline and deterioration and that the fact she has declined so rapidly in the space of a year indicates that this could be a far more serious neurological disease.

My parents are both doctors therefore they deal with the issues as far as which doctors to see, which medications to take or not to take. My biggest frustration with the Canadian Health Care System is the annoying fact that it can take months and months in order to get referred to a specialist from your GP. I remember a year and a half ago when i had my Sciatica which was almost diagnosed at the end of July 2017, the doctor immediately sped up my MRI referral and i was told that the earliest possible appointment i could get was on Nov 19, 2017. Luckily i was in Pakistan after that and i managed to get all the appointments and physiotherapy sessions i needed. Anyways, my parents especially my dad and the doctors they are consulting know best with regards to the medication they are taking. I believe my mother complained that the medication she was given at one point made her drowsy, slow, dizzy but now she realizes if she doesn't take them, the symptoms will accelerate further.

As far as help is concerned, i have tried to contact people to come over and help her out with household chores, laundry, cooking, general cleaning and being a caregiver but my mom is very hessitant to avail it because she just does not like the idea of dependancy and the fact it is more expensive here in Canada in comparison to Pakistan. Getting someone from Pakistan to Canada, not sure if that is possible or practical.

My mother, father and sister just recently went to Pakistan for 2 weeks for my baby sister's dholki and while my mother had the same symptoms there, she felt a lot more at ease, peace back home in Khi because of the fact that there was so much help available i.e. Cook, Driver, Maid, Cleaner and even a massage therapist who came over. My dad actually even point blank told her that there is no way she can live in the west in this state.

Me and my dad get critizied a lot by people, i.e. whoever i have told this story anonymously too but the fact is my dad is a workaholic, the idea of retirement scares him, he cannot sit idle, he also does not want to be dependent on others and he has seen many times people actually suffer health issues and problems when they retire because they stop being physically active, therefore i suspect he will continue to work as long as his heart, health and will permits him too.

For me, i need another years worth of experience and need to clear one final exam before i get my CPA designation. Can i realistically quit my job, career at my stage in life to be a caregiver?

I can tell you about my Chacha who is an aero space engineer in the US and he has had to take care of a full blown Autistic Kid his entire life and the only way he was able to do so was by launching his own engineering consulting firm which he operates out of his home and which makes it easier for him to be there for his kid 24/7 while also being able to earn a living. But how many people have this luxury and comfort of being in a profession which allows you to work out of your home?

I agree she is suffering from depression. Hopefully my folks will consider the right course of action.

 

[PakLFC]

My Ammiji died of breast cancer when I was 17 that was a terrible time for me. We'd been told she wouldn't make it, waiting for her to go made it doubly difficult We would take turns to be with her sharing responsibility then the neighbours would help out as well. We had extremely kind Sikh neighbours at the time, they were a great help and comfort to us even bringing food for us seeing how upset we were that no one wanted to cook. Men can only do certain things for their Mum or a very ill lady like we can't change, dress or take a lady to the toilet that could only be done by my sis, lady relatives, family friends and neighbours ladies. In that state my Mum became very argumentative, grumpy and even abusive complaining about anything although we did not tell her that the doctor's couldn't do anything more for her. Things were incredibly difficult for me as I am the youngest of four kid's and was the closest to Ammiji. I did whatever I was told never arguing with her or making a fuss about anything at all knowing it would only upset her further. Often I didn't know if I should enter my Mum's bedroom with tears rolling down my eyes so would wear shades to hide them and not speak coz the voice gives away that the person is crying as well. I think Ammiji figured out that she was going but knowing the situation chose not to say anything so not to upset us further. A person on the brink of death does not need to be told anything. I am so glad now that I took time of my studies to take care of my Mum after all heaven is under a Mum's feet. I showed incredible patience and love to my Mum doing all she instructed me to at the time without ever questioning anything. There is nothing more we can do for a loved one on the verge of leaving us.

 

[The Viper]

Very sorry bro. Hopefully she gets better soon.

 

[IMMY69]

It’s so sad when hearing of what everyone goes through and the pain and suffering of their loved ones..

Stay strong, all of you.

 

[Napa]

It is really nerve wracking to see one's parents become extremely unwell and deteriorating rapidly with each and every passing second.

My mother was an extremely proud, ambitious, determined, steadfast woman who rose to the top of her career, profession and single handedly looked after us as a father when my father was travelling outside for work 3 weeks every month. She rose to the top of her gynaecology dept in the govt department she used to work in back home in Pakistan and also did 3-4 private clinics and a few teaching positions as well as keeping an eye on us at home. Working in a Pakistani govt hospital is really hard especially dealing with corrupt PPP politicians who have taken over all govt institutions in Sindh and totally destroyed everything.

While Me and my dad moved to Canada 6-7 years ago, my mother and my baby sister didn't move because she wanted her to do medicine in one of the top medical schools in Pakistan as she believed it would be a much better option rather than doing medicine in medical school in Canada or the US. But trust me, living a split family life has huge ramifications between spouses and no matter how loving and understanding they are, it takes a toll where both spouses feel the other doesn't understand each other or communicate or show patience with each other. Heck the one consequence of me living all by myself mostly on my own in the last 7 years is that I myself don't have the patience to live with people and prefer solitude most of the times.

My mother finally had enough and retired for good a year ago once my sister finished medical school in Pakistan and she finally wanted all of us to start living as a family again. She was unhappy about living in Canada knowing that living in the West will be a totally different ball game to living in the comforts of Pakistan but she was like its not an option.

Unfortunately things have just gotten worse, a year and a half ago my mother was diagnosed with Parkinson's but it is incredibly shocking to see how rapidly the whole symptoms have spread. It's gotten so bad now, she can no longer eat properly, she can't walk unassisted, she feels dizzy and hazy a lot, can't move her neck and her speech has become slurred.

My dad travels a lot, three weeks in a month for work, I work for an accounting firm and my hours are very brutal where I am either working 10-12 hours a day or studying for exams. My baby sister quite her job recently so that she could focus on her USMLE exams in the US and while she is at home most of the times to take care of our mom, she is getting married by the summer of next year and will not be around for ever.

It is just frightening to see how much help my mother needs. My daadi is 86 years old where she has health issues of her own but even she commented that atleast I can lift things and eat properly and efficiently if I want too.

We have been pressing mom to agree to let us hire a helper who can help her out with doing house chores and a caregiver but she is so far refusing. Although something like this should not be said for ones parents but it is proving to be very impossible having to live in the West and to take care of someone who needs full time care and both me and my dad can't quit our jobs either.

Last night my dad told my mom pointblank that she has got to accept help from a full time care giver. My mom is still refusing and even emotionally blackmailed that if we impose a caregiver on her then she would rather go back home to Pakistan where the cost of hiring help is much cheaper.

Anyways I thought I would ask people over here if they have had any experience or issues with this especially in the West. Me and my dad have tried our best, but practically speaking we can only be able to watch her full time over the weekends but it is not possible forever.

My dad was in favour of telling the rest of the family members about her deteriorating condition so that people would have a better understanding and would try to help make her comfortable as much as possible but my mom was against it saying that people will spread things and any future parent or girl they try to pursue for me will be put off by an unwell mother in law.

Looking forward to people sharing their opinions, experiences and practical suggestions

As someone who has taken care of ailing parents, I can empathize with your situation. I think your mother is lucky to have a son who cares for her.

I wonder if your mother is worried about hired help because of the cost. If the government provides help, then it may be easier for her to accept. Alternatively, you can propose that you will get part-time help rather than full-time help, and increase the amount of help over time. Maybe stressing that you and your dad earn a sufficient amount to afford help may convince her. Finally you can something like "the number 1 reason why I work is to take care of you, and you are not letting me do that".

 

[Napa]

For me, i need another years worth of experience and need to clear one final exam before i get my CPA designation. Can i realistically quit my job, career at my stage in life to be a caregiver?

I would not recommend you quit your job. It may be difficult to explain to future employers the gap in your resume. Also, the thing your mother wants most in her life at this point is for her children to be successful.

 

[MenInG]

As someone who looked after my paralyzed father for 20 years, i sympathize with each of you and pray that ALLAH give you all the strength needed to take care of your parents - Ameen

 

[Savak]

The most stressful worry is the fear that she can fall any second and the problem is that no one can be with her 24/7.

The drawback of the medicines she takes is they make her drowsy and dizzy. Our house in Toronto already has some demanding stairs. I had tried arguing with my dad let's try to move to a big one floor house with no stairs but that's a very rare find.

Therefore we have decided to install a 2-3 story elevator which is no cheap endeavour, worth atleast $150,000 but anything to make it easy for her avoid climbing the stairs.

But the biggest lesson from this episode is you can never take your health for granted once you touch your 50's and 60's

 

[GoUgandaCranes]

The most stressful worry is the fear that she can fall any second and the problem is that no one can be with her 24/7.

The drawback of the medicines she takes is they make her drowsy and dizzy. Our house in Toronto already has some demanding stairs. I had tried arguing with my dad let's try to move to a big one floor house with no stairs but that's a very rare find.

Therefore we have decided to install a 2-3 story elevator which is no cheap endeavour, worth atleast $150,000 but anything to make it easy for her avoid climbing the stairs.

But the biggest lesson from this episode is you can never take your health for granted once you touch your 50's and 60's

Difficult situation to be in, and a lot of us can well relate to the situation.

This is something that you can do to start

1. Create a clear communication line between you and your parents. Tell your parents that you need to know what's happening here. The disease and all that and learn about care-giving from the perspective of that disease. This shouldn't be kept secret for more than one reasons, and a very selfish reason is that a lot of diseases are hereditary and if your parents are having them, you might get them later. An early alarm may help you alter your own lifestyle to delay or prevent the inevitable.

2. Avoid massive investments before really understanding the cause. You said you want to have a 150K houselift, ask yourself the question, do you really need that? Do you think your mother living alone in the day will be using it all the time? Will the risk increase / decrease or will it only add extra pressure on all of you involved in the situation?

3. Learn basic medical treatment and first aid. How to check blood pressure, how to administer first-aid, basic injections, increase a bit of know-how etc. That stuff comes handy

4. Ask the local community around if any help could be possible. Canada has a lot of Pakistani community and there are always some mosques where you can get an announcement done. Maybe some aunty would be free, my sister lives in Canada herself and she maintains that Canada is like a mini cleaner Karachi when it comes to local community. Ask around, find a group of people, get your mom introduced in the community and maybe some amicable solution can be reached.

5. Don't give up on your job if it's not easy to do so. It's something that you may regret later, and that actually makes the parent-child relationship even more complex and multilayered where entitlemt and sacrfice intertwine and it's just a recipe for long-term depression. In older times, people would tell you to get married to a family girl who doesn't have a career but she'll come immediately and offer some help to your mom. That time is over now so just be practical, bend your schedule wherever possible, tell your employer abour your family situation and get more friendly terms.

6. Install some baby monitors and stuff like that. Spend a few weekend making your house accident proof. Visit an elderly people home to see what happens there.

7. Learn about the Canadian health care system. Sweden has people who visit the elderly people at home and the state provides for it. I am assuming there are going to be some similar to this options available in Canada.

These are ofcourse general suggestions and don't really help the whole scenario. A lot of us in this forum are probably dealing with similar situations so it's basically a difficult thing to manage. Hope your mother's health gets better and wish you a lot of strength.

 

[Saj]

Heart goes out to all in this situation.

 

[Savak]

Mom and Dad told me off for trying to be inquisitive about my mother's health and condition for a while.

Mom and Dad finally came clean today and admitted the Parkinson's diagnosis one and a and how it was progressing at a much faster rate than they initially expected it would. And they both broke down really badly while telling me "These are very testing and trying times for us". Then my mom broke down "I have lived a very honest, Islamic life and even I get very upset as to why did something like this happen to me at a relatively younger age of 60".

Then my mom tearfully went like "I know that at times I am not very easy to be with during this time, I can't communicate as well as I used too or physically do the things I used too, you know how independent, proud I used to be and these are very difficult times for me and I don't need you guys to make it worse for me. I now truly realize how Allah can take everything away from you in a heartbeat better than any point in my life. I thought i dreamt I would relax in my retirement and play with my grand kids and help my kids raise them"

Then my folks were like we don't want you to worry or stress about this. My dad was like this is my primary responsibility, you dont worry about this 24/7. You need to focus on your life and settling down professionally and personally.

I have been deeply shook at seeing them in this state. First priority is to get my mom caregiving help around the house and to make her feel as welcome as possible. I have never been as close to her compared to my baby sister but I am going to do whatever I can to make things easy for her.

Next I need to figure out what I will and can do in the long run in the accounting field. It was always a goal to either run and start my own practice from home in Canada or if I had to move to Pakistan then to get into teaching in Pakistan in high schools, universities and pvt tuition centres. But just doing something which allows me to earn decently and allows me to be as close to my folks as possible.

 

[Solid Snake]

So sorry to hear about this, I can't imagine how difficult dealing with this must be for you and your family.

The events of today must have been very upsetting, but hopefully being more open about the situation will let you all do everything in your power to help your mother. Like some have mentioned, a care giver, possibly slowly introduced if it has to be that way, will be a massive help.

I wish I could offer more advice, but the only other thing I can think of is to stay as positive as possible, be patient and never let your mother feel like she is a burden. Everything you are doing is highly commendable, and from where I'm standing she is lucky to have a son like you. Wishing you all the best in this very difficult time my friend...

 

[Savak]

I spoke to my mom regarding my mother going back to Pakistan and getting full time care there. According to him the quality of caregiving help she will receive in Pakistan is poor and the medication that she needs is not available in Pakistan.

I am not convinced on either reason to be honest. I refuse to believe that Parkinson's medication like LovaDopa, Cardiodopa and blood pressure and blood flow increase to the brain medication is not available in Pakistan. Perhaps some doctors over here can shed light on this

 

[Deewana Mastana]

It is a no brainer that the quality of medical care that your mother will get in Canada or in most western countries is going to be far better than what is given in Pakistan due to negligence of bigger proportions and not having enough qualified staff around to actually help.

I do think the medications are available not just in some parts of the country and I am sure others can confirm that but I would not suggest that she should go back to Pakistan for treatment as or unless you have done a well grounded research and have faith in the institutions there.

I am not suggesting that they are not trustworthy and they are bad but we all know what the quality of care there is in Pakistan in more less most of the health facilities maybe barring Agha Khan, SKMT and maybe a few others but in general they are not worth taking the risk.