I am taking out time to explain to those who at best have been relievers and well wishers (and their roll too is equally important) but mix it with Caregiving. Caregiving is what Nina and Mrs. Aju mama are doing to name a few. Pl. Understand all names cannot be taken in mail so no one left out should take an offence. These are direct hits but in next decade we will be ourselves dependant parents or will have spouses needing/ giving Caregiving. And all those who read these mails will realise worth of the definition of Caregiving given by me. And hired Caregiving (though rough and crude) is costing nothing less than Rs. 20000/- p.m. (includes bai(maid )basic facilities at home, diapers, etc. And excluding medical expenses which will be mind boggling. Are u prepared????? And therefore (though as per my habit I take my own instances) but am writing all this for greater benefit of all at the cost of losing some relatives and friends as rightly said by you Pratima ( C.A.) my youngest sister.
Caregivers
Caregivers are people who take care of other adults, often parents or spouses, or children with special medical needs. Caregivers help patients with:
1. Shopping and cooking of patient
2. Taking them out in open ( be it temple, garden or even in varanda )by holding them or in wheel chair etc.
3. Patients Housekeeping : cleaning patients room and keeping it hygienic and odourless as much as possible
4. Cleaning of patient's cloths, bed sheets, pan, vessels soaked in urine, potty, blood, spits, sputum etc.). At times smell and site of these things can really be ruinous. And patient can really keep flowing things out and caregiver keeps cleaning.
5. Giving medicine as per schedule and one mistake like forgetting BP tablet can cause havoc.. But with overlapping of things same can happen.
6. helping with toilet activities, bathing , combing and dressing at times even massaging, applying various skin creams and ointments even at private body parts as they are more sceptical to infections being bedridden weak and ailing and flooded with servants , healthcare providers and visitors.
7. time to time replacing diapers soaked in urine and potty.
8. attending to frequent calls of thirst, urination, at times vomiting, diarrhea and these symptoms can be persisting for days and months and caregiver is interrupted while sleeping, eating, cooking etc. etc. for doing needful.
9. feeding, giving food as per chewing abilities, as per digestion capacity, parhej ( like avoiding salt, sugar, chilli ,oil etc. as per patients health requirements).
10. Providing company and emotional support. When things become routine and visitors stop coming then caregivers have to be friend too.
Caregiving is hard, and caregivers of chronically/ long period ill people often feel stressed. They are "on call" 24 hours a day, 7 days a week for may be months and years. Who appreciates the sacrifices and seva (human service) of parents of mentally challenged child / paraplegic/ paralytic member for years on?
To motivate the caregivers all housing societies/ mohalla / communities should institute an award for such caregivers or atleast make support groups. What good are these societies if they were to share and meet only on holi, diwali, garba etc. . And that too without those busy Caregiving. And newspapers should cover such heroes once a week instead of covering only khans, bachhans, tendulkars everyday.
If you're caring for someone with mental problems like forgetfulness, abusive, angry, non cooperative, ever criticising, with open wounds, infections it can be really be difficult. My request for helping caregivers with tight mahole/ atmosphere was only understood probably by Akhil and Suresh Tauji. But Akhil's intervention had effect only for few days on Daddy.
Support groups (which we don't have in India ) or only matured compassionate people can understand what is Caregiving ..
Rest are either:
· Advisors
· Visitors
· Passersby
· Crowd
· Curious
· showing presence that we too visited.
· enemy wants to see suffering of patient or relative
· Some become additional responsibility like visiting person may himself be old/ fragile / sick and needs Caregiving to some extent or is demanding or spendthrift at the cost of patient or is new to the city ( and wants to do shopping/ hoteling / business/ invites too many other guests etc.) .
Following are useful but are still not the caregivers:
ü well wishers / sympathisers/ concerned show that they are part of this phase, ignore some lapses which are possible for 24X7 caring responsibility. Do not make u feel guilty of lapses, do not highlight unnecessary petty things, do not spoil atmosphere by wrong doings/ saying, shouting, passing comments on efforts, facilities etc.. Rather will help in getting right consultant, maid, patients equipments , massager, discounts in many patients purchases, emergency transport etc. and thus provide a great help,
ü Darling Palys: They find suitable time and visit patient and do gup shup/ Chit chat read good books for them (religious or otherwise) , play cards or whatever patient likes.
ü Relievers: Mrs. Indumati Shedde a member of my sr. citizens association when heard of maa's sickness made following offer: Alok bhai in case all of you have to go out for few hours then give me a ring. I will come with my dabba and look after her. And till even midnight if u can drop me back home. This is called caregiver reliever but still not caregiver. But this is a great human service and person with great maturity and heart can only understand and offer such services. By the way her husband though retired sr. Citizen himself regularly visits cancer patients sanatorium at Bandra and spends time with cancer patients, reads newspaper for them, plays with them, spends quality time with them while relatives of many patients have stopped coming but he visits them regularly.
Alok Tholiya (S.E.O.),
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