This past July, my husband David passed away. His health had been deteriorating this past few years with Parkinson's/dementia and his last months were complicated with recurrent attacks of pneumonia. Therefore the children and I were prepared for his passing and had experienced many of the stages of grieving as he gradually lost his physical and cognitive faculties. Organizing care for a disabled loved one and subsequent bereavement brings with it a great deal of paperwork and visits to government offices. And at a time when one is feeling raw and vulnerable, a kind word and warm smile can make all the difference. Positive experiences On the list of those who displayed sensitivity: • The geriatric specialist and social worker at Bnai Zion Hospital who facilitated my decision-making in getting home care. • The manager of the Interior Ministry Haifa office for authorizing foreign workers. He sped up the application and then, hearing my accented Hebrew, printed out the English version of the 20-page guidelines to the rights and obligations in employing foreign workers, which listed in detail the financial issues as well as provision of accommodation and job description. • Jonbryan, the caregiver who won me over from the start although I had dreaded having live-in help and another person sharing our home. The house was kept spotless and my husband had never been so well groomed. With Jon's gentleness and kindness, his respect and intelligence, I am convinced that these 15 months of home care prolonged David's life and gave it a quality that I could never have achieved alone. But inevitably, with the recurrent pneumonia and frailty, the time came when David needed more intensive nursing care. With many tears we parted from Jonbryan and met the next hurdle of finding a good care home. • Yad Sarah, with its amazing lending service of equipment for the disabled and elderly and friendly helpful staff. • Clalit Health Services' Dikla (Harel) disability insurance for the speed with which they contributed to the caregiver's salary. On presentation of the relevant forms and medical documents they did not hesitate to pay their share, and when David went into a care home they immediately upgraded the monthly contribution. When I called to inform them of David's passing, the person on the line was kind and sympathetic. • A gold star for the entire staff at Dor Carmel Nursing Home, medical staff and caregivers, social worker, dietitian and therapists, who all worked as a team. Whenever I arrived I was greeted with smiles and a report on David`s day. Every patient received kind and gentle love and attention. Caring for people at this stage of their lives must be one of the most difficult physical and emotional jobs out there, but there was a lot of joking and laughter and music, which made our daily visits more tolerable. Sitting on the spacious balcony with a view of the Galilee hills with our coffee and cake, David thought we were in a holiday hotel. • On the early morning of David's passing, we drove directly to the care home to see him and each of his caregivers came out to hug us, tears in their eyes. Death is no stranger in such an institution, but for them David was not just another person to keep clean and fed. • The Hevra Kadisha registrar who received us that morning could not have been more sensitive and sympathetic. The Haifa cemetery is full and unless one pays enormous sums to reserve a plot there, the nearest cemetery is at Tel Regev, some distance out of the city. When it was opened some years ago it was very bare and stark on a stony hillside. Unfortunately, I have accompanied dear friends on their way over the years and had seen how it had been beautifully landscaped with lots of trees and shady courtyards for the ceremonies. My son had his doubts, but the Hevra Kadisha registrar suggested that we go together to see it for ourselves, and he called the manager there to meet us and allow to choose the plot. As the funeral was delayed for two days to allow our son and his family to arrive from New York, we could spare this time and we were able to choose a plot under a tree on a high spot with a beautiful view of the Zvulun valley. But it was the words of this wise man that calmed me for the first time that day: “We are only looking after David for you, keeping him safe for the time of Redemption.” • Israeli society, whose family values were never so apparent as during that period. Two grandchildren are in the army and were immediately released, so within a day we had every one of our extended family in our house, preparing for the funeral and shiva and giving comfort to each other. • Friends and family who turned out for the funeral in spite of it being the hottest day in July and the Fast of Tamuz and that another friend and member of our community was also buried that day in the other cemetery. • The friends, colleagues and the extended families of our in-laws who filled our home throughout each day of the shiva, bringing food and comfort. They represented every stage of our 40+ years in Israel. • The bank clerk who checked our joint account to make sure that it could still be used. She shed tears when I told her the news and came out from her cubicle to give me a hug. • The social worker at the NGO that handles the employment of caregivers. She visited frequently and was always on hand to give advice and information and called sympathetically when she heard of David's passing. Thus started the paper trail, informing banks and pension offices and other government offices of my change of status. But it was the sensitivity or lack of which had the greatest impact on my coping mechanism. Negative experiences It seemed to me that these offices acted with obscene speed when taking something away but with illogical slothfulness when making an adjustment to rights or pensions. After the shiva, I called the parking authority to cancel the dis - abled space outside our house, and by the next day it had gone, the sign removed and that section of the road painted over. Moreover: • The more trivial insensitivities are usually just mere stupidity, like the librarian (a holiday replacement, not the usual friendly ones) who wanted to fine me for bringing my books back a week late. When I explained that I had just got up from shiva for my husband she did not bat an eyelid – but did cancel the fine. • The driver delivering Rosh Hashana packages to pensioners of Elbit Systems, a company where David gave 30 of his most creative years, called to speak to him to check the address. I told him why he could not speak to David and he never bothered to deliver the package; whether he kept it for himself or returned it to the office was not clear. • The municipal social worker who was supposed to oversee David's care through his period of disability and visit periodically. She visited once a year, gave me incorrect information and when - ever I called with a question she couldn't remember us and had difficulty typing our name on her computer. • Top of the list for insensitivity and stupidity is the National Insurance Institute, and while protests that block highways may cause chaos for the public, it is time for a nationwide protest on behalf of the disabled and elderly. The main qualification for work - ing for one of their departments must surely be a sour face, a total lack of empathy and amazing physical flexibility required for shoulder-shrugging. We had fought a two-year battle to get increased disability rights for David in spite of having documentation to prove that he could only live at home if he had 24-hour care. They won because the appeal was still ongoing when he passed away: prob - lem solved for NII. For some totally illogical reason, their contribution stops when a disabled person enters a care home. Some “big brother” on their computer knows exactly when because within a couple of days of him entering the care home, they sent a letter saying that all his disability rights ceased forthwith! However, by law one has to give a foreign worker a month's notice and accommodation. When hiring a foreign worker, one is advised to pay into a monthly savings account in order to cover the eventual redun - dancy pay, vacation and pension when they leave. Families trying to claim more hours from NII can apply to appeal committees and even go through the process of the Work - ers Law Courts. It is a humiliating soul-destroying experience and to be sure this institution is spending a great deal of money on these committees and smarmy lawyers in order to avoid giv - ing money to the people who need it. The next example of total illogic and insensitivity of NII is that their “big brother” knows when a citizen has died and immedi - ately stops their monthly National Insurance pension. After the surviving spouse fills in yet more forms, it actually takes over two months until the pension is adjusted to add the widow's benefit, two months during which there are funeral, tombstone and gen - eral living expenses. The ultimate insult was the phone call I got about a month later from NII asking me why I had claimed David's pension a year after he passed away. Evidently the Interior Ministry had made a typo in the English date of death showing it as 2016 instead of 2017. The Hebrew date was correct. I used some Hebrew words that I did not know existed in my vocabulary when replying to this clerk, but he insisted that I had to make another visit to the ministry to get the date corrected. The only human being I encountered at NII was a volunteer, a very kind man who checked that I had handed in the correct forms and gave me accurate information about my rights. But with a smile he warned me that it all takes time! Not all those who are bereaved are blessed with such supportive family and friends, and one wonders how those who are more alone cope with all this bureaucracy and lack of sensitivity when they are feeling so raw and lost. But it is the moments of empathy and warmth that bring light into the darkness.
