Thursday, June 16, 2011

The plight of a care giver.

I have often spoken highly of care givers who have taken care of mentally physically handicapped children/husbands etc. Several of my posts deal with the predicament of care givers and harped on the manner they deal with the challenges they face. However, care givers are humans too. It is not easy to be socially cut off from the world and pretend that all is well with them. One such person was Mrs. R S. I was a frequent visitor to their house till about 4 years back. My Husband and R S were colleagues and despite the difference in age their friendship continued after my husband’s retirement. The couple had a mentally retarded son. She would talk to me over the phone and would say that she would feel better after a chat session with me. It has all changed now. I am wary of a visit to their home. Reason?? I cannot pinpoint the cause but I get the feeling that all is not well in their family and Mr. R S perhaps thinks that I am not a good influence on his wife. No one has said it in words but there is something very wrong.

It all began when I invited the family for lunch. It was difficult to bring their son by scooter they said and I offered to pick them up and drop them back. I assured them that I had no problem if the son came along. I felt that Mrs. R S hardly went anywhere and this was perhaps the least she deserved. However, knowingly or unknowingly I had perhaps hurt Mr. R S by insisting that they all come over as a family. They had a college going daughter who offered to stay back and look after her brother.

“Mummy needs a change. So let her accompany papa. I'll stay back.” She had insisted.

I failed to take the hint and they came for lunch on a Sunday afternoon. I picked them up, dropped them back and on my way back told Mrs. R S that we could plan more such outings. She needed to go out once in a while.


After this incidence Mr. R S cut himself off from us in a very subtle and polished manner. He shifted residence but did not give us the new address. We came to know of it through a common friend. His wife did not know of the change in her husband’s attitude and rang me up asking me why I hadn’t visited their new home. I had to tell her that I did not know her address and she was kind of surprised. Known for being frank I went to their house and jokingly told Mr. R S that he owed us a party. He simply smiled and gave no explanation. I continued to be in touch with his wife but kept wondering what went wrong. Was it something between the men folk? My husband insisted that he had given no reason for Mr. R S to distance himself. He was probably busy at his work. Finally, when Mrs. R S told me that she had asked her husband to look after the son while she accompanied me to the temple and her husband was sarcastic when he spoke of her having friends who could pick her up and drop her back, I decided that enough was enough. If my good will gesture was going to be misinterpreted I was not going to stretch myself and hold on to the friendship. I still respond when she calls up. I visited R S when he was in hospital but that’s it.

Till date I wonder if I over reacted. Mrs. R S really needs me. I certainly don’t intend to create a rift between them. I feel very angry that he should let her handle the boy all by herself and not let her have an hour’s outing even on Sundays saying that he had to rest. Was that the reason or does he want her to lead a cocooned life always? I suppose she repeats our conversations - that are mainly counseling sessions – to him. Does it make him insecure? I do feel bad but I cannot impose myself on them. To top it Mrs. R S does not realize or understand that I deliberately avoid visiting her. She puts my not visiting or calling her to my being busy. Cooped up in the house with the son, she is showing signs of mental instability. She once forgot to switch off the mobile and I could hear her screaming at the son who had perhaps soiled his pants. Can I not have a moment of relaxation? She had asked. Didn’t I just take you to the rest room? Why didn’t you relieve yourself then? Are you a dog – she had screamed. This was hardly the person she was a few years back. I really wish to be of help. How do I do it without compromising on my self respect??

33 comments:

starry eyed said...

Very painful to read...I'd like to whack that Mr. RS. But yes, it is quite a dilemma for you...I wish that guy would realise that if his wife burns out or loses her sanity, it's to his and his children's detriment. Power and control, that's what it is.

writerzblock said...

Feel awful for MRs.RS. But yes, there are many many men like Mr.RS who simply do not like the idea of the wife having any connection to the outside world. And this has nothing to do with education or wealth. Only a question of upbringing. Sadly, this affects families more than one can imagine, and has a cascading effect on children!!!!

Nothing much one can do about it, though. If you persist in calling her/talking to her, it might cause even more problems in their relationship. However, just being there for her, keeping your eyes and ears open, and ready to listen, should help. In time, maybe even an occasional phone call to check on her. Poor lady...

R's Mom said...

Oh what a dilemma...it makes me feel so sad...you cant do much can you? I wish Mr. RS was a bit more understanding

Sangi said...

The plight of a caregiver is a tough one. Can I ask you one thing though? I read another post you had done where three children seemed to be trying their best to take care of their parents and the sympathy was not as much with them. The thought process seemed to be that one of them had to give up their job to take care of the parents. Is that also not a bit over the top? No offence meant, am trying to understand why a younger caregiver's plight is not thought of as sympathetically.

Jayashree said...

That is so sad. I don't think there is much you can do, though....except wait for her to make the first move and ask for help.

apu said...

That's really sad. I somehow feel that if her friendship with you make Mrs RS happy, you should continue it. After all, you have no obligation to make Mr RS happy! If he really has a problem with it, let him sort it out with his wife openly- she can't spend her life shut away because of his stupidity.

lipstick said...

I too have often wondered how my mother should react to her friends and family when my father behaves in an odd( read cold, sarcastic and distant) manner for whatever reason.Not many people will overlook the issue and still be as close as they would have been before. After all to the outside world the husband and wife are considered one unit.

Jay said...

It is very disheartening to read the plight of Mrs R.S and the boy.

Sumana said...

People do not want to take responsibilities or they try and run away from things.In the guilt of which they try and ruin other lives. Very painful post but can see where Mrs. RS is heading as well.
Not sure how much you could do here but may be some counselling that your husband could provide to Mr. RS might help a bit atleast.

hillgrandmom said...

The solution to this problem is probably for you to continue talking to Mrs. RS whenever she calls you and....possibly visiting her when her husband is out? Also, would it not be possible to take her son out at all? Then maybe he could also go to the temple?
About her screaming at her son, I don't think it shows mental instability; it's probably more like sheer exhaustion. Poor lady!

Hip Grandma said...

Starry eyed:Mr. R S at least goes to work and has some diversion. His wife deals with the boy all day long and sleeps with him in a different room so that her husband may get a good night's rest. The boy wakes up and keeps walking all over the place and she keeps track of his movements. i cannot understand why her husband is unsympathetic and takes her for granted.

writerzblock:You are right.There are several couples like Mr and Mrs R S and despite the fact that the husband doesn't like my interaction with his wife I do try to keep a balanced view of her plight and let her know that I am there to help her in whatever small way i am able to.

R's Mom:He was not like this earlier. In fact 18 years back when his son was just 8 years old I helped him put the child in a school for differently abled children. I even became a member of an association of parents of physical/mentally challenged children just to express my support for the cause. The boy was not able to learn much in the school and after he turned 16 he could no longer go there. It may be some frustration or unspoken/unshared anxiety that is making him behave weirdly.

Sangi:You have raised a pertinent point. however, i don't think that I have blamed the children in the post mentioned by you. I only meant to say that for want of time children are not able to do much and it is the 68 year old father who is the main caretaker. In fact i have particularly mentioned that it was not anyone's fault.

Here again I offer my 2 cents. If a child is in need of special attention a mother thinks nothing of giving up everything to take care of the child. Can we honestly say that about a situation where parents require special attention? I don't for a moment think that children ought to give up their jobs to take care of parents. But can they not hire a competent domestic help/nurse to make sure that the healthier parent does not fall ill? does it make sense to send a 68 year old father to hunt for a decent house in a week's time and keep hounding him over the phone calling him incompetent and tight pursed?again, no offence meant. Just a different view point.

Jayashree:Yes it is sad. Unfortunately there is little one can do. Regarding this lady, she is unaware of my perception of her husband's behavior and calls me up now and then. I too respond.

apu:True I don't have to worry about Mr.RS and I don't. However, I am careful about the kind of interaction I have with his wife for fear of adding to her problems.

Hip Grandma said...

lipstick:I can understand how your mother must be feeling. Many men are insecure and feel left out when their wives have a good time. They feel neglected. Hence the tantrums. Those among your mom's well wishers who like her for the person she is will understand and she needn't worry about those that don't. She ought to maintain touch with them.

Jay;It is disheartening but she also ought to insist on being allowed some free time. Continuous sacrifice leaves one bitter. Now I find that her daughter wants her to come over to Chennai - where she works - for a week just for a change and she is unable to decide whether to go or not.There is a saying that one has to speak up to be heard. This is where she ought to take a stand.

Sumana: yes, it does suit the husband to run away from his responsibility towards his differently abled child. What would happen if his wife did the same? My husband does not feel free talking of family matters even with me. How can I expect a person who talks politics all day to counsel RS? Ha.ha! He may just end up discussing the spectrum scam with his friend. Moreover my husband is a sensitive person and has visited them just once since they shifted residence and did not inform us. He does not stop me though.

hillg'mom:I do talk to her on the phone and there is no need to visit their house when he is not around. Mr. RS on one occasion knew that i meant to visit them and he left a few minutes before i reached their place and came after I left. His wife called me up the next day and told me that a neighbor spotted him in a nearby temple whereas he had told her that he was going to his office although it was a Sunday.

No, the son cannot be taken to the temple by the two of us. He tramples on stuff and keeps falling. He is about 5'8" tall and needs constant attention.

Sangi said...

Commented at the post. Thanks for the hearing.

Hip Grandma said...

sangi:In my defense I can only ask you to read my earlier post 'http://hiphopgmom.blogspot.com/2009/12/old-age-or-second-childhood.html'
and allow me to plead guilty. You are right. Old people can be difficult to please and i plan to hound the life out of my son a few years from now. Since we enjoy a relationship like that of you and your mother he ia allowed to hound me right back.

You sound so much like him and I wonder if you are a friend of his. Ha, ha! enjoyed your comments to the core.

Hip Grandma said...
This comment has been removed by the author.
Hip Grandma said...

Sangi: Ooups! I think cut paste won't work. The post i asked you to read was 'old age or second childhood' written in December 2009. We oldies can hide behind our age. Lucky me!

tys said...

being a man, perhaps i can tell you what could be going on:

- by offering to collect and drop them, u have, perhaps, without intention, shone a light into a family issue which to them was a private issue.

-Mr.RS, may be a very private man and may not like the fact that his son and his ailment is being discussed. He may be seeing ur help as an intrusion.

- He could also be resentful that his wife seems to be seeking an outside help. Which in his eyes, maybe percieved as his impotency in such matters.

Iam not justifing him...

but maybe its Mr.RS who really needs your help...maybe if he understands what ur intention is ( he could be misunderstanding ur well meaning intentions), he might be a willing support..

just a thought..

btw, i always come to ur site, like a visit to my grandmother's during a vacation...it gives me some sort of solance..

how u been?

Ugich Konitari said...

HHG, started commenting, and then it started becoming a post, so just wrote a separate post on my blog , with a link to yours.

I seem to actaully agree a bit with Tys above. I've seen perfectly OK people suddenly become like this as they age. I think the stress reaches a critical mass and their perceptions and thinking gets all haywire or defensive. Looks like the Mrs is still managing, but the family seems to be at the receiving end of Mr RS's behaviour.

sangeeta said...

This is a sad situation and i can understand because i have been in such situation myself.

Help is a very tricky thing in such situations i know , sometimes when somebody offers help and announces it in words , it may hurt the family or one of the family members . I agree with tys that the husband needs more help and understanding because his attitude will make a difference here.

No one can understand the plight of such parents who have to go through this , with old n ailing parents it is a different thing , with our own child being dependent in such a way and not being happy n growing like other children makes the parents life miserable ...yet some people deal with it . I know.

Indian Home Maker said...

Very painful to read this. All one can do is be there for Mrs RS, and maybe let her guide how she wants to be helped.
It seems Mrs RS likes your friendship, I feel you should stay in touch with her, even if Mr RS doesn't like it. Maybe just being in touch, talking and listening will show what else can be done.

Hip Grandma said...

Tys;thanks for giving me a man's perspective. may be you are right. summer vacations almost over and you visit me so late. How are Madhu and kids particularly the ankle biter?


Suranga:yes I too feel that Mr. R S has unshared/unspoken worries about his son and it is frustration that is getting the better of him. But cutting off help won't help will it?

sangeeta:When a child ails but can tell one what the problem is it is much better. Here the child is not even toilet trained. He is like a 1 year old that has to be taken to the rest room every now and then. Very sad for parents who may not get sleep when they think of what the future holds for the boy,

Indian Home Maker:There are times when Mrs. R S says weird unbelievable things that one wonders if she is imagining them. My main role is to counsel her and I do it whenever possible. This is why I strongly feel that she needs some time of her own. Mr. R S does not even let her turn to immediate neighbors for help and asks her if she was in a position to return favors. Ultimately she is the one who has to stand up for herself. Others can just motivate her.

tys said...

@hipgrandma : mads and the kids are back in bangalore..the ankle biter is rite now 7 years old and is , much to the dismay of his mother, turning into his dad...we have a 3 year old daughter who is fondly known as velcro..becoz shes constanly attached to mads..mads, is totally floored by the amount of attention she gets from this one...she probably deserves it :)

i hve been coming and checking up on u from time to time...but didnt leave any comments..

hope u will b able to get this prob sorted out...looks like it need the super granny touch

dipali said...

Such a sad and tough situation. Do try and be there for the lady, if only over the phone. I've seen quite a few homes where the father somehow dis-associates himself from the differently abled child, leaving the entire onus on the mother. Can they afford an occasional caregiver from a home care centre? I'm sure the lady needs a break sometimes.

Pointblank said...
This comment has been removed by the author.
Couch said...

We never know what the other person is actually going through... Maybe he hates the attention to a personal problem. Smtimes, when am feeling down, when someone asks me "wats wrong?", I avoid them. They are trying to help me. But I might be uncomfortable discussing it.

Hip Grandma said...

Tys:i thought velcro was the ankle biter and the son was object in perpetual motion. I suppose your daughter is too tall to bite ankles.

Dipali:Yes it is sad. It is not very difficult for them to arrange for occasional home care. My husband would do it once in say 2 months for an hour or two. The problem is that the necessity of an occasional outing with or without the son is perhaps not even contemplated. The husband doesn't realize its importance and the wife has resigned to fate.

couch:The time when mental illness was considered something to hide is long gone. Ultimately the couple are suffering for the wrong reasons due to their hesitation to communicate and discuss their problem. I agree that I may not understand what goes on in their minds. But I feel that they ought to turn to someone if not me for support in whatever small way.

Haddock said...

First time here.
I think you should go over and have a talk with her... not to sort out the matter, but to make her feel that it is and was as good as the old times.

Hip Grandma said...

Haddock:Welcome here. thanks for your suggestion. I think I'll do that. your kerala pictures were superb.

Dotm said...

Sometimes just being a friend is all you can do. Maybe the husband is jealous of the time his wife was spending talking to you. Maybe they have lost the ability to discus problems and talk together. Sometimes, after years have passed, the stress overcomes them and blame comes into the picture when there is a disabled child or maybe the husband feels she spends so much necessary time caring for their child, that it leaves no special time just for them and he is feeling neglected. If only they would let others help and find some time just for each other. It might do wonders for their relationship and also for their marriage. Just my opinion, of course , since I do not know them. God Bless the three of them.
You have proved your loyalty as a good friend and no one can do more than that. Hugs, Your friend Dot

It's Dee for U said...

Hello HHG,

I wonder why Mrs. RS called her son a dog? I understand (this is an understatement in itself) its extremely difficult to take care of a son who is special and stay alone and not have a life for herself. But no matter what it is her son. She should not call him a dog. I am sorry to say this HHG, but is she comparing her life to yours and feeling she is not living? She has this burden whom she has to take care off? I am sorry HHG, I dont mean to offend you. But I feel its not fair on her part to call him a dog. What was the boys mistake to be born like this and suffer? I am sorry, but I am getting carried away with many thoughts about the poor child, who has no life at all. I am sorry, if this comment disturbs you, but I feel its better you tell Mrs. RS to treat her son with more love.

noon said...

Hi HHG - so heart breaking. I am not justifying it - but I feel sorry for the mom - dog etc I am sure she does not mean it one bit - it must be madness going on inside her head from years of isolation and physical and mental exhaustion - any one who has not been through will not be able to understand I am sure - I have seen one mother at my son's gym class last year - God I felt like if I had been her I might have collapsed from physical exhaustion - she had to help him with every single thing - from talking to wearing shoes to going ot the bathroom - he was 7 at that time - but had the dependency of an infant almost...he looked angelic - such a beautiful perfect face - I just wanted to go and hug her - just for being such a fantastic mother - life is so damn unfair. What else can you say. No matter what please do keep in touch with your friend. She needs you. It is clear from your post.

Hip Grandma said...

Dotm:The problem is that the husband gets to go out and meet people since he is still working. The wife's needs to interact socially are either neglected or not considered important. However, i also feel that the wife needs to stand up for herself. As the saying goes ..'One has to speak up to be heard'....

Its Dee for U: I too agree that it was wrong of her to call him a dog and it is good that the boy doesn't understand a thing. However, let us make some allowance for the woman. It is not easy handling the boy. I've seen her following him all over the house in case he trips and falls. It is tiring.

Noon:True. A mother may end up saying things she does not really mean. It is very exhausting. More so when the husband does not understand her need to socialize once in a while.

Tasu said...

Now this post was too painful to read. We normal human begins may really not know how it is to be mentally retarded or to have someone close whose mentally retarded. I feel very sorry for Mrs RS and am sure there is something wrong in Mr RS for behaving in that fashion with his wife. I think something is wrong or is missing in his fatherly love. It simply feel awful to even think about Mrs RS.I'm too young to understand these things or to offer you any sound advice , but I would still like to suggest you to bring out things in open with MR. RS.