Wednesday, July 16, 2008

The challenges with caring for the elderly

I read this blog recently and forwarded it to my sisters. On second thoughts I think I should forward it to my usual list of people that I mail interesting articles to, because this is something every one has to face - either themselves when they grow older or if they have aging parents or relatives to take care of now. The astounding number of comments from readers is a reflection of a real issue that both care takers and the elderly face in their old age.

My father passed away Jan'07. As the youngest child in a family of six siblings, the first five close in age to each other, I was in the unique position of seeing my parents in their old age when I was still fairly young compared to my siblings or even a lot of my friends. Even my sister who is the fifth in the family is seven years older than me. Yeah, I was clearly an accident. My mother is sweet enough to tell me that it is probably my luck that my father led such a good life until the day he died - this is when I tell her how good their life would have been had they not had me at all. Five kids would have been settled and they could have relaxed in their old age much sooner.

"At least he didn't suffer...just two days of pneumonia and he passed away", my mother says to console herself and us when she talks about my father's passing away. I too thank heavens for that. It would have been unbearable to see my independent, active, confident father become totally dependent had he come back home with lung complications with an oxygen tank. My parents were staying with my brother and sister-in-law at that time. They (and us visiting them) would have surely taken good care of him - but every one would have been stretched to the limits particularly my mother. And my father would not have coped well emotionally if he had to depend on any one for his basic functioning. In that sense, I think we were blessed that we did not have to see him suffer and that he passed away with dignity. I wish for my mother a long and healthy life. If my father was active, she is super active. And super emotional. And can spiral into absolute negativity on the rare occasion that she is even down for a couple of days with fever. I pray to God that she should never suffer or become physically dependent on any one in her old age.

My mother-in-law was a heart patient - she had a congenital heart defect that was diagnosed only at age 50 or so by when it was too late to operate on her and be sure of fixing it. She too had phenomenal energy and has really awed many cardiologists with her energy despite her weak heart. She became physically weak in the last month before her death. She was very exhausted physically and at that point I used to have sleepless nights wondering what we should do - should we move right away back to India or should we wait for a month or two to see if she gets back to normal and is able to travel to the US in which case they were both willing to be with us and get a Green card? But before we could even get to such decisions, she suddenly passed away. My FIL too talks in the same vein and says that he is just glad that she passed away rather than come back home physically incapacitated.

My FIL is a diabetic patient but is quite active and self sufficient thus far. He will be moving to the US - he just got his GC - with plans of eventually getting his citizenship since both his children (my husband and his sister) are in the US. He will be living with us for the most part. I have two very young children and coping with all the work including cooking meals on time is just barely manageable. Nearest family for us is a five hour drive. Some friends yes, but all have two young children, so can't even imagine asking them for any help unless absolutely necessary during an emergency. It gives me the shivers to think how we would cope if there was a dire emergency. Not just my FIL, for that matter none of us can afford to be in anything less than the best of health at this point. Even on rare occasions when B has sprained his shoulder, it was hard because that meant at night I would have to attend to both kids all night.

Back to the main point, caring for an older person is something that requires patience - almost like caring for a child. But caring for an older person who is physically dependent requires patience, courage, stamina and will. A strong will and a sense of duty - for even love falters if there is no will during tough times. I have seen even young couples where one person had to go through cancer therapy where the marriage was really tested. No wonder they say "In sickness and in health" during wedding vows.

Some of the comments in this post are really sad and heart breaking. A few of them may come across as heartless. But mostly you can see that the children/siblings of these elderly people are trying their very best with their heart and soul to provide them with good care. Still it can stretch a person to the limits. Especially in this country where there is no neighbor walking in randomly to check on you and give a few minutes of break. Even when I take care of the two kids, if I need to quickly go out and get some milk, I will have to take both kids along. It would be no different with an older person who needs constant care and attention.

I wonder how many of us have thought about our own old age. I tell B that I never want to be dependent on our children financially. But what if our health fails? That thought then brings me closer to the reality of how it might feel to be in a totally different world of assisted living. Not that that is bad. But somehow I have this mental image of living in a bread and breakfast inn except that that would be home, not a vacation stay. Breakfast at set times, living by rules set by the nurses. All reasonable, yet so different from the feeling of home.

I saw my friend and her two siblings struggle horribly in taking care of their father who deteriorated from Alzheimer's. She with her two very young children, her sibling on the other coast and one in the UK, all with relatively young children - together struggled to give him good care. Her mother once called me when I actually did not have much time to talk. But I could not hang up on her at all. It was heart breaking. At some point, she did not really care if I was even listening. She just wanted the feeling of someone who had the time to listen to her. I just forgot about what I had to do and just listened. I did not utter a word other than "Uhm, Uhm" for a whole hour if you can believe it. She was like a prisoner in a foreign world. There was no world outside of caring for her husband for her. Holding him back from running out of the house in the middle of the night, waking up in panic hearing him turn on the stove in the kitchen or hearing him shower in the middle of the night or soil his clothes quite unaware of what he was doing. It was wrenching to even hear of all this from her. In some ways, much as she terribly misses her husband, and the children their father, there is a feeling of liberation from the stress they were all going through at that point. Having to provide care in such situations especially when you have your own dependent children to take care of can really make or break relationships. Between the spouse of the caregiver, between siblings. One can only hope that through it all, you come out stronger and not broken in spirit.

I think of my father and again feel a sense of relief as I write about what my friend's father went through. And I realize it is a blessing to have a good life and as much of a blessing to have a good death. I only wish people were at least spared the unfairness of physically debilitating illness in their old age. These days if I hear of someone old who went to bed and never woke up, I can't help but think of that person as truly blessed.

16 comments:

Aditi's Album said...

I understand how you feel about your father's demise. It IS really more trouble to have to be physically dependent on somebody for all basic needs. We lived with our grandparents and my grandfather, who was extremely active, energetic and driving till the previous evening suddenly had an attack of paralytic stroke. He suffered a slow and painful death, but survived 10 years. And it was a challenge for us - it is like taking care of a child - lots of patience and strength. And my grandmother refused to let any nurse/maid help him.

Collection Of Stars said...

Very true noon. Seeing the state my grandpa is in now and seeing hoe difficult it is for the care giver to cope with the situation and, I pray that everybody dies a painfree and peaceful death. As I told you the other day, my mom takes care of her father who is 87 years old. She is okay with the care giving (she cannot leave him for even 5 minutes to go out anywhere) but what really affects her is the way he is suffering. It's very sad that somebody who has led a full and active life is reduced to such a state.
God is very unfair - he takes away people who have not even lived a part of their lives while on the other hand he prolongs the lives of those who are completely dependent on others and have no will to live.

K 3 said...

So true noonie. I still remember my grandma always praying to God to give her peaceful and quick death when the time came ... that was her prayer till her death - which was not so peaceful but quick by some standards. I miss her so much today, but I realize what she meant. I hope that I live fully and can wish and pray for the same when the time comes.

Mystic Margarita said...

So true, Noon. I, too, pray that my mother never suffers or become physically dependent on any one in her old age. I know she prays for that, too. And I loved the line where you said that love often falters when there is no strength of will - and though caring for an elderly family member requires huge amounts of patience and commitment. Lovely post.

Neera said...

As hard it is to deal with a parent's death, one can only take solace in the fact that there wasn't much pain involved. I too pray hard for the same for my parents.

For the situation you'll soon be in with ur FIL living with u, all I can say is just have faith in God. He'll give u the strength and ways to figure it out if the need be. Don't worry about things which are totally out of control.

*Hugs*

noon said...

Aditi - Gosh, sad that he suffered that way...must have been so hard to see...very true - like taking care of a child really...

CofS - your mother is next to God...just amazing her dedication and sincerity in the way she is taking care of her father. And in her case God has been so unfair...seriously she deserves at least a physically easy old age herself...

K3 - man, dying youngish is not a bad thing for the person who goes - just bad for those left behind! I know no one really wants to die when it really comes to it but I feel like I would rather die healthy at 60 than suffer and prolong till 80!

MM - how have you been? Yeah I can imagine how you feel about your mother...esp since she is alone...must be hard on you too mentally...

Neera - very true. I worry about it but I too tell myself that things will somehow work out and sort itself out when the time comes...really hoping what ever troubles we face, they are manageable ones - that's all.

dipali said...

I've lived through this with my late mother-in-law, who was virtually bed ridden after a couple of fractures, for the last fifteen months of her life. Although I did keep full-time assistance for her, it was still terribly draining on all of us. And my father's been more or less bed bound for the last few years, he and my mother had been with me for the past three years, till I fell ill with typhoid. They are back at their own flat in Delhi, and my sister is spending most of her time with them, leaving her own family to do so. My mother does almost everything for my Dad, but though quite frail herself refuses to have a home nurse. It does become very difficult and complicated. I pray that all of humanity be blessed with a merciful and painless release from this mortal coil.

BangaloreMom said...

Oh Noonie

I am seeing this happening in my own family. My mom's dad is 90 years old and is quite healthy physically but is slowly slipping away mentally. My mom who looks after him on the other hand is becoming older and weaker every day. I see her getting so frustrated with the situation. All I can do now is pray for a painless end for my grandpa because anything else would just cripple my mom and I know she will not be able to take it.

So yes, sometimes I feel a quick and painless death is even more important than a good life.

Poppins said...

It does scare me too Noonie, the thought that the IL's or the mother will grow old and become dependent on us. And how we will deal with it. I'm so pampered and spoilt by mom, cant even imagine life the other way around. Although God knows I'll do anything for her in the her last days. Anything for my inlaws as well for that matter. I cannot imagine abandoning them after all that they have done for us.

Isn't that why our parents ask us to get married and have babies earlier so that when it's our turn to take care of them, we're atleast done with our own children's responsibilities?

In an ideal world, my mom who's 57 now will only need such intense care 15 years from now, when I will still be young enough to care for her, but atleast my kids will be more or less independent. But who knows what will happen and when?

When is your FIL moving with you? Hopefully he will be in good health for a long time, and may only require your help a few years from now by which time atleast KB and KG will be going to school or something.

S.Praveen said...

Hey this one really set me thinking. I rememeber those days when my mom was suffering from hodgkins lymphoma and my sis and me were young kids, my dad really struggled to take care of my mom and us, he would keep running between hospital and home for one full year and not once have I seen him complain about his situation. Its only his love for my mom and the undaunted effort, that shes fit and fine now. I really wish both of them have a healthy and peaceful life as they age.

Preethi said...

oh my noon.. this was so close to reality for me.. I need to go now.. but will send you an email soon.

Suma said...

last year my aunt passed away after being hospitalised for 4 months and in a coma too...her daughter took leave and along with my uncle managed tirelessly for those 4-5 months... she indeeed was blessed to have them around...

my mother always prays that she is physically active till the end...for their sake i hope so too...
*people were at least spared the unfairness of physically debilitating illness in their old age. - i wish that too...

a lucid and honest post...

take care...

noon said...

Dipali - yeah - those kinds of situations really test you in more ways than one...I really just pray now for a comfortable old age for my mother and for my FIL...and of course for us when we get there!

BM - only after really seeing how it affected my friend's mother (when her dad was suffering) I realized no one pays attention to the health of the care giver and the toll it takes on them!

Poppins - I wish for your mom a long and healthy life...a lot of people are indeed blessed with that - it is not like they have to go through a tough time in old age...but when they have even one mild episode (like my FIL had a mild attack) of any health issue - then it gets to be scary...and I do want to be able to be present and fully take care of FIL or my mother if there is a need - but with young children I hope I have the strength and courage to balance it all...

S.Praveen - God, am so sorry all of you had to go through soemthing so traumatic...but really glad to know that she is well now. Really commendable what your dad did without complaining...even if it is expected of a spouse - it is still not easy..

noon said...

Preethi - look forward to reading your mail...

Suma - thanks for visiting..sorry about your aunt. It is even worse when we happen to be far away when a close one is dying...awful feeling actually...

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