Unspoken Needs

Ms. Krisna Muthusamy

SRN. SCM.NICU.FP. FTC. Bsc. MA

Penang Hospice
Palliative Care Association of Johore Bahru June 2012

 Human sexuality is how people experience and express themselves as sexual beings. Human sexual activity has biological, physical and emotional aspects There are other ways of expressing feelings eg Close friendship love, holding hands, hugging, kissing, caressing People facing a life threatening illness feel they are robbed of past joy & often wish to discuss issues of sexuality with a trusted health professional

Sexuality

Barrier in communication
Medical professional often feel They have no time The dont know how to begin the conversation Knew little about sexuality Dont have the right answer

Age?

Age and Culture

Case Ca breast Family separated couple
She was moved and nursed in a separate room Daughters moved in/slept in Husband used their own room Seldom went near wife/ busy Daughters fussed around her He was pushed out /was shy Patient depressed Did not want to talk or eat

Ca.Lung with bone mets

Had a girl friend Wife moved out Depressed/scolded girl friend Wife asked to come home Pain , cough controlled Breathlessness became less No B/T morphine needed Became cheerful and happy

How to handle this?

2 CASES Family members counselled To accept their friendship and let them be together One family Tell all visitors the other man was a helper who comes and does the dressing and bathing etc Another family Claimed they were childhood friend and hence they are close Hence friend came to be with him as he was dying

Ca colon with local spread

Young couple with 3 girls I love her very much I cant bear to think about the emptiness without her I left my job to look after her I cannot imagine life without her I wont be able to face the empty house/our empty bed She is not just a wife but my friend Soon all will be gone I will be alone!

Astrocytoma
Young couple . No children Had 3 surgery. He had been with her all the time main carer Last op-became bedbound/semicoma Mother moved in She is my baby and I am her baby We love each other very much. I took care of her and she liked it. Now the disease is advancing so fast. I cannot bear to be without her. I dont know how to care for her now. She wants me to attend to her. She will not vomit or fit when I feed or wash her.

Family taking over

Ca. stomach with local spread
Young lady--- married less than a year---no children Moved in with mother upon diagnosis Family took over the care Husband visits Family persuaded her to go for chemotherapy Did not respond to treatment In and out of hospital Family very caring No quality of life

Looking over picture Very breathless and in pain 1st wedding anniversary spent in hospital

No opportunity to counseled or talk to her

I want my wife
Rt. ant. Mediastinal teratoma
Young man-divorced no children. Lives alone Moved in with mother when sick Sisters came from abroad to nurse him Wanted wife to be with him Mother wanted him to marry someone else Brought in a new girl and introduced Angry , annoyed , banged the doors, Refused analgesic Sister informed wife Wife wanted to remarry and renew their marriage vows

MND.
Young man, married 3 times . Wives live in Ipoh sexuality ignored by medical carers. Started to have fantasies and looked for sexual partners amongst maid and carers

 70yrs old lady diagnosed as ca lung with mets to liver and spine given 4 month to live. Came home to Penang to die Husband demanding. Does not understand she is in pain Husband will be sued for messing with children in the condo Niece-in law dresses up in an inappropriate manner does not respect the elders Quarrels and upsets sisters family Private nurse inappropriate behavior with husband

Ca Cervix With Bone Mets

Happy. Lived with daughter and her family Husband main carer Talked freely about her illness Shared same bed On CBD Wanted to have good days Agendasons marriage Advised son to be a good husband like father To have children and be loving and caring just like daddy

Ca. scalp
Married with 2 boys Main carer wife(only 49 years old) Asked if disease is contagious? Can they share the same room? Used less analgesia when wife did the dressing

Ca. Lung
Married with 2 children Wife main carer Didnt want hospital bed Didnt want to stay with in-laws Asked to be brought back home Wanted his wife to be near Wanted his wife to sleep in the same bed Had a night nurse once sent her back. Said he did not need a nurse!

Ca breast with sternal mass

Carer maid. Children did not stay with them Husband had stroke Cannot accept diagnosis Patient wanted to stay away from him Scared his illness would hinder her recovery Husband wanted to be near her He became agitated He would cry and hit the bedside Brought up to be next to his wife He became quiet

Ca. Cervix with bone metastasis Husband has a stroke

Miserable and lonely Did not want to talk Daughter came from aboard Daughter tried to brighten up the room Grand daughter drew pictures and pin it on the wall Still quiet Husband ex stroke patient . Everyone forgot him and concentrate on patient Husband brought into the room and left Daughter closed the door and left them alone

Next visit the patient was such a different person

My husband is a good man

Wife was the carer. She attended to all his needs Eye toilet ,mouth toilet Ear toilet Ngt feeding--- all done by her Husband enjoyed the care given by his loving wife He never exhibited any pain or discomfort, although his eyes were red and discharging He was unable to open his mouth He had NPC with brain metastasis
Wife commented that He may look different now but he was the same loving man she married

Dont tell I have a stoma

Stoma belt

Stoma studs

Crotch less panties

I want your papa to bathe and attend to me

Papa had been looking after you for so long . He is tired and need a break I am here now and I will take care of you

How to handle this?

What a kind daughter

You are right You help now