Home Care or Institutionalization?

February 3, 2010 1 comment

Sylvester* revealed that his grand aunt (mother’s aunt) had been moved to a home after she had been diagnosed by a form of dementia. The decision was taken by his mother. The reason was that she was becoming increasingly restless. She was wandering off, losing her temper with family members, becoming violent – oh you know the works. Sylvester recounted painfully a fight that this aunt had with her own sister who had come down from Australia. He said that the two almost came to blows. I smiled. This was common. And the anger that he felt with his grand aunt from Australia was justifiable, after all she was in possession of all HER faculties, right? But it’s not so easy. Even a person in charge of her/his faculties is allowed to feel indignant and absolutely stunned at the bizarre behaviour that their loved one displays! It’s an unimaginable thing to understand that someone you love so much has gone loony. And for a few moments, you tend to lose your equilibrium as well.

It’s not your decision, but your attitude that counts.

But Sylvester said that his mom still feels guilty for having shifted his grand aunt into a home for the aged. Actually, his mom’s sister used to visit the grand aunt at the home regularly and his mom would go as often as “time permitted”. But a few days before the grand aunt died, they went to the home (Syl’s mom and her sister) only to find that their aunt was in a terrible state. She was smelling of urine and she hadn’t been given a bath for a few days. They were utterly disgusted and distressed but didn’t know what to do. They got the nurses to clean her up and laid her down on the bed. And a few days later, she passed on.

What do YOU think? Was it right for Syl’s grand aunt to be put in a home? Was it her fault that she was “losing her mind”?

Sylvester was asked to answer a simple question. Do you think your mom would have felt the same way had the home been taking care of her well and the last episode hadn’t happened? He said, “No. I think she would not have.” Sylvester agreed it was more a guilt his mother felt for his grand aunt being neglected.

It is not so much about whether you keep your loved one at home or in an institution, but it’s more about how you do it. If you keep the person at home, but are burning out and not realizing it, you may cause more harm to the patient and good. You’ll end up yelling at the patient, crying yourself to sleep and feeling guilty and angry almost all the time. On the other hand, there is a danger of putting your loved one in an institution and completely cutting off from that situation. We all know about the horror stories about how families don’t want their loved ones back, right? It’s quite natural to not want someone back. It’s traumatic to deal with the illness, the change in the nature of our relationship with our love one, the loss of our loved one and most of all, the sacrifices that we might need to make!

Having said that, the best way to deal with the situation is an age-old method, but it works beautifully. Ask yourself, “If I was in her/his position, what would I have wanted my family to do?” The answer that you get (provided you do have a functional conscience) will be your path forward.

If you are a caregiver and contemplating about putting your loved one into an institution, here’s one suggestion for you – Do it with love and grace. This is your conscience checklist –

1. Am I really capable of taking care of mom/dad/sibling at home? Do I have the resources to hire a nurse at home?

2. For how long do I want to shift mom/dad/sibling into the institution?

3. How often will I visit her/him? Am I capable of making a visit several times a week? Once a week? Once in 2 weeks? Once in a month? (How often would I have wanted my family to visit me, if they’d put me in an institution?)

Every illness has an active phase. During this phase, caregivers feel stressed because they’re dealing with the prognosis as well as the daily realities. During this phase, it might be advisable to seek help from professionals for the patient. You can even consider hospitalization or institutionalization. But once this active phase passes, the patient will become more manageable. At that point, she/he begins to need only love and care. It might be good to keep your loved one at home if you can hire a nurse. In the case of Schizophrenic patients, the nurse may not even be required. In fact, being around family and in society, helps to keep another attack at bay. With love and support, patients are known to be “happy” for long periods of time.

If you do not have any support, you may have to put your loved one into an institution, but you can of course visit them several times a week, right? No support needed for that, right? A word of caution, sometimes institutions will be mirroring your attitude towards your loved one. If you don’t visit them often, the staff there may feel it is okay to not pay attention to a patient who is not getting checked on often. It’s wrong, but it’s true. If money could buy everything, would we not have bought physical wellbeing for our loved one? So remember, your responsibility doesn’t end with institutionalization, rather it begins there. You have to walk that extra mile to let your loved one know that you care, even if you can’t keep them at home with you.

To end, here is an inspiring story of a husband who had to put his Alzheimer’s affected wife into a home.

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Shraddha: Giving Up Exisiting To Care

November 28, 2009 3 comments

I was finishing my day at college and the very thought of going home was not a very pleasant one.   I had to go home and cook lunch, feed my mom, clean her up, clean the kitchen and stuff after the family had eaten and then look after my mother through the day.   Yes my prelims were nearing so also had to study for them.   Think about what to make for dinner and also go for my music classes in the evening….come back and make dinner.   Again feed mom…clean up…the thought of going through all this bore me down.  I did not feel like going home at all.

 

Still I went through the lecture not listening to professor at all but thinking about my mom.  She was sick we didn’t know what it was but it was some sort of illness in her brain.  We had started by taking her to a gynaecologist and a homeopath since we thought that her mood swings and general lost feeling and absent-mindedness were due to menopause.  But that did not seem to work.  It was sad to see that the Zarana teacher who everybody loved at Udgam School was losing a bit of herself with every passing moment.  Slowly she started to forget everything and lost the ability to even do basic things like clean herself, eating on her own or even going to the bathroom.  she was like a helpless child now… had to fed, bathed, hair had to be combed, and cuddled when she had these bouts of crying and yelling for no apparent reason.  I remembered the numerous visits to the psychiatrist and how he diagnosed her with some kind of schizophrenia.  And later even pre-senile psychosis.   It was devastating that I had to study the exact symptoms and visit mental asylums and see patients and study their symptoms.  I would break down in class.  Nobody understood what I was going through.

 

I walked out of the campus and sat in an auto rickshaw and headed home, which was not very far away from my college.  I was just paying the driver looking for some change in my purse, when I saw mom walking on the opposite side of the road.   I panicked.  She was as it is very far; I let the rickshaw driver keep the 50 rest. And ran towards her, but had lost her.  I didn’t know which way she went from the crossroads.  I just stood there feeling scared out of my wits.  Mom did not remember where she lived, her phone no. she sometimes couldn’t even remember her name.  What I going to do? Where was I going to find her? Tears of helplessness just started flowing out of my tired eyes.  I went home and asked my old grandparents why they let mom walk out of the house knowing her condition so well, to this my grandfather just yelled at me and told me that what can we do?? She just opened the door and walked out…what do you expect we run after a mad woman??    Now the tears of helplessness were accompanied by tears of anger too!!!

 

My father was not in town he used to travel for work.  but I called him and told him what happened and he too started scolding me that I didn’t take care of mom and it was my fault that she had gone off!!  I just did not know what to do… I called my maternal uncle to ask if mom had reached his place by any chance.  So he said no she hadn’t and he too started to tell me how we had failed to take care of her…i felt so guilty…why did i have to go to college..Had I been at home this would have never happened.  The suspense and the holding me responsible event ended after mom just walked into the house and quietly went into her room and sat down.  I just followed her and asked where she had gone off angrily.  To this she innocently replied that she just had gone for a walk.  I hugged her and cried my heart out.   I had nearly lost her!!

 

The same evening at the dinner table the silence was killing.  My father was back too.  I announced that I would not be going to college from tomorrow.  Everything was still quiet.  Nobody asked me a thing as to why I was doing this. Or it was only two months more for my third year to be over I could be at home then.  Nothing….!!  No one said a word they knew that this was the only way out and I had to stay home to look after mom since my sister was very young and it was mandatory that my father go to work.   The conversation was over.

 

That was my last day at college.  I never went back.  Or gave my prelims due to which was not allowed to give my final exams.  My professors pleaded with the principal to please allow me to give my finals as an exception, but he was adamant and said no…

 

I never got a degree.  I did not mind but I was there at home to be with mom.  And make sure that what happened that afternoon never happened again.  My mom suffered a lot for many years she was diagnosed with Alzheimer’s and each day had some story or the other, some more painful than the others. It was not easy to see mom’s sprit die each day.  The day she actually I died I did not shed a tear.  I guess they had dried up… she was long gone for me… for the six odd years i had lost a part of my loving mom..My wonderful mom, my wonder woman mom…she was and is my woman of substance…and shall be the woman I admire and am inspired by always….

Neeraj Hirani: Paragraphs of Woe (2007)

November 27, 2009 1 comment

This is a very sad time. Last January my father suffered a stroke of paralysis which put his left and right side out completely and permanently. And there it stays. He has improved now and may stay on in this state for a year or more. There are barriers psychological as well as physical. I have never run into so many barriers. The few words that I put down are written in the midst of constant interruptions. Instinct makes me want to run away from the situation, a thing impossible of course. Needless to say I will not be leaving Bangalore for a long time in the future.

I spend about two hours a day with him. My mother ten. She works very hard. She goes about her tasks like one of those spirited bombardiers at war who jump to battle with serious disregard for the dangers lurking there. She stays cheerful and makes things easier than they are. There are terrible washings every day. 5-10 sheets. There are countless shifts in positions, innumerable changes of sanitary diapers, and infinite pleas to get him to sip some water – he refuses and why shouldn’t he? Let someone help YOU go about the rather private functions of defecation and you will know exactly how he feels. He has taken a fondness to sitting in the courtyard on his wheelchair, where he sips his tea, with the warm rays of the sun beating down his hunched frame. There we sit, Father, Mother and son, and have most of our daily conversations. His nerves have gone and that has brought on a numbness and loss of eyesight and he worries of his condition all the time. His once booming voice now reduced to a gentle whimper, tells us each moment that he is trying his best to fight, to come back. He tends to easily get discouraged, and breaks down often. A kind of second childhood has fallen upon him. He cannot bear the idea of trading his violence for a life such as this. He has always lived life on his terms and cannot stand that the head of this house has to be treated like it’s youngest child. He goes to sleep early, and wakes at the first tempering of dawn with darkness, for he has to brush his teeth, empty his bowels, finish off other daily duties of cleanliness and be ready to greet the physiotherapist. Just before we bid him Goodnight, the intake of 12-15 tablets, signals a harsh reminder of his pitiable condition, and the end of another day. Tomorrow will be another day of the same, just better, we tell ourselves inwardly and retire to bed.

Neeraj is now studying at Babson College in Boston, U.S (Batch of 2011). He was awarded a scholarship of $ 20,000. He went through a tough time deciding whether he should take up this offer. His dad was his primary concern. With support from his family and encouragement from his friends, Neeraj made the toughest decision of his life. His dad continues to be in the same state as described above. His mom and sister are take care of him back in Bangalore. You can leave your prayers for Neeraj’s family in the comments box. Thank you.

Pooja Kulkarni: Cancer and its Callousness

November 27, 2009 1 comment
Hi Ekta,

My beloved mom passed away on July 2nd in Ahmedabad. She was suffering from metastatic breast cancer. She suffered from breast cancer in her left breast 10 yrs ago. After a radical mastectomy and 6 cycles of chemo she was declared cancer free. This was when we were still in the FYBA at St. Xavier’s. I was heartbroken seeing her in pain and the usual “why me”, “why her”,”why us”. All the guilt about me being a troublesome teen causing her to have this dreaded disease consumed me. My dad withdrew in his own shell of grief. My older brother immersed in guilt faraway was studying hard for his final year of engineering. But my mom fought on! She stayed with us doing all her duties and responsibilities !

Three years ago she had a chemical imbalance in her brain and it took several months for her to regain fine motor movements, talk without a slur in her speech and write in a legible way. She got great support from her college where she was teaching Hindi. I was in chicago then married and a one year old to be taken care of. My dad took great care of her tending to her day and night.A year ago she was diagnosed with a malignant tumor in her pituitary gland. She tried to remain strong but it was heartbreaking for us to see her suffer. I flew down from Chicago to be with her, for 3 months i was with her when she would be admitted in the ICU after every horrendous chemo dose. My dad and me were there for her. Some days were good, some were bad.

 

My mom loved going out, eating out and was very social. The last whole year she spent holed up in a room unable to walk properly, feeling dizzy and weak and with splitting headaches. The doctors did a fully body PET scan on her and found out the cancer had spread to her bones, liver and her brain. The central nervous system was affected.

I came back to Chicago in January and by May end she could not hear and had started losing her memory. My brother who stays in Boston rushed to be with her and dad. Dad had been alone taking care of her till now. But when she could not move her legs anymore, he could not alone lift her till the bathroom. They got a nurse but things kept getting worse. She talked incoherently, could not feed herself. Eventually she stopped talking and was on a feeding tube. The docs gave us a 2-3 months.

I was still in chicago. My son had started going to school. One day I got a call from my dad telling me to rush asap and that they would keep her in the morgue for me if anything happens. I reached Ahmedabad and saw her eyes closed and gasping for breath with an oxygen mask on her face. She was in a deep coma. I touched her and kissed her. In two days she was gone. I dont remember when I last talked to her and had a normal conversation. All through this my dad lost 8 kg and is mentally and physically drained out. I brought my dad with me in chicago. He ll be with me for a month and then at my bro’s in boston and then back to Ahmedabad.

Ekta, you have been in my thoughts so many times. I remember the time when your mom was affected by Alzheimer’s. You being strong and going about your life! Being a caregiver is indeed very stressful. There are so many emotions involved and if you have someone to share it with, talk about it, it becomes liberating!

Thankyou for thinking of a support group for the caregivers. and thank you for reading this very long email. My heart feels less heavy now. May our sweet loving moms’ rest in peace and be our guardian angels always.With all my love and best wishes.
Pooja
 
Pooja lives in the United States with her husband and little son. She lost her mother in 2009 and is learning to live life with a smile. On Thanksgiving Day in 2009, she was grateful to be alive and  for the support of her friends and family.