Caregivers looking after a chronically ill loved one often give up many of the things they used to enjoy because they have no time left to themselves and this often leads to depression and other serious conditions.
She speaks with feelings and only those who experienced caregiving can relate to it. Mrs Bashkiroff’s husband suffered from Alzheimer’s for nine years and died in 1978. Her battle to find suitable care for her husband in the US at a time when information about Alzheimer’s was non-existent pushed her also to co-found one of the first Alzheimer’s support organisations in the US. Her experience was eventually published in a book by Gail Bernice Holland – For Sasha with Love.
Struggling on her own, Mrs Bashkiroff promised herself that all the suffering and sacrifice she went through would not be wasted – her grief inspired her to help others in similar circumstances and in 1977 co-founded a non-profit association, Family Caregiver Alliance (FCA) which first met in a church basement in San Francisco and is now a State-wide system helping caregivers.
The Alliance has served as a model for another 10 Caregiver Resource Centres throughout California, including the National Family Caregiver Support Programme in California, and has long been recognised as an information centre on long term care.
FCA is focused on empowering caregivers with information, respite and emotional support, educating the public, the media and policy makers on the needs of caregivers. All services are free or low cost.
FCA, Mrs Bashkiroff told The Malta Independent on Sunday, was started in response to families’ need for support and assistance as they tried to cope with the far-reaching, devastating effects that Alzheimer’s disease and other brain-impairing disorders have on their lives.
FCA includes support groups, educational programmes, publications, counselling programmes, day care centres, respite programmes and more.
“These services and programmes are completely dedicated to support caregivers, so that they can continue to provide care to their family members,” said Mrs Bashkiroff.
While in Malta, Mrs Bashkiroff visited a number of homes for the elderly where they, including patients with Alzheimer’s, are looked after. While praising some others, she says, lack facilities which could help caregivers and the patients themselves live a better quality of life.
“Seeing and talking to the caregivers, I understand what they are going through because I went through it myself,” she says. “It is extremely important to provide care and support to members of the family who are caring for someone who is ill. If no help is provided the whole family will suffer... caregivers are human beings and they need help too.”
Caregiving, she said, should be a word and not a form of ‘sentence’ or ‘punishment’.
“Finances have to be made available to help caregivers have time off. Alternatively, if the patient has to be put in a home, the fees should be affordable and the homes properly equipped for their specific needs,” said Mrs Bashkiroff.
She said young people should be encouraged to visit the elderly. “The elderly can learn from the younger generation and vice versa,”
It is not just medical care that is required but in cases where patients are suffering from Alzheimer’s, games and toys purposely made for them should be made available.
From videos to dolls, puzzles, colouring books, to a ‘handyman’s box’, in the US ‘games’ and ‘toys’ specifically made for use in convalescent homes are extremely popular.
Puzzles featuring adult topics are made specifically for people with dementia. Similarly, colouring books, which are used for line drawing, have topics that appeal mostly to men such as sports. Another game is the “conversations” picture cards; the cards are used for identification, to group by colour, or to stimulate thoughts, memories and conversations.
A national stamp in aid of caregivers is one of Mrs Bashkiroff’s dream she has yet to see come true. “This is already being worked on in the US, and the same idea could be picked up in Malta,” she said.
Anne’s husband Alexander Feodrovich, known as Sasha, died in 1978 after a nine-year battle with Alzheimer’s. At the time there was little information about the condition and, together with her son, Anne struggled to help her husband through his illness.
Her personal experience with Sasha helped to identify what carers needed most, and how the State can help. Her efforts reaped the desired fruit.
A woman who had never made a public presentation, Mrs Bashkiroff testified before First Lady Rosalynn Carter in the 1970s when the President’s Committee on Mental Health met in San Francisco. Since then she has never looked back.
Mrs Bashkiroff will never be forgotten for the ‘hope’ she has given to many families whose relatives have been afflicted with Alzheimer’s. The suffering and heartache she felt, watching her husband’s physical and mental state gradually deteriorate, was channelled positively into gentleness and kindness. The pain she suffered gave her the strength to move on and help others with Alzheimer’s.
Twenty-five years have passed since her husband died but for Mrs Bashkiroff the memories of that illness and how it affected her family will always be with her.
She testified before the Presidential commission on Mental Health presided over by First Lady Rosalynn Carter, spearheaded The Family Survival Project in San Francisco, which resulted in the first State-wide service for all brain damaged adults and their families, was an active participant at the inception of the Alzheimer’s Disease and Related Disorder organisations, and served on the Board of Trustees of the Mental Health Association of San Francisco.
Included among Mrs Bashkiroff’s many awards and honours are the national Jefferson Award from the Institute of Public Service, the Women’s International Living Award, a Certificate of Recognition from the Senate of the State of California, the Jane S. Ophuls Award in appreciated of her service as Founder and Honorary Chair of Family Survival Project; Founder’s Award, Alzheimer’s Association of Chicago; and the Rosalynn Carter Institute Caregiving Award. Mrs Bashkiroff was recommended for the Presidential Medal of Freedom (2000), the highest civilian award given in the US.
Anne was born in Tsingtao, China, of Russian immigrant parents who had fled Siberia during the Russian revolution. She was educated in English schools in China and Japan and remains multilingual today. She left China in 1947 to attend UCLA but marriage to Sasha and a move to Argentina interrupted her plans to study for a degree. The couple returned to San Francisco in the early 1950s, where Anne served for 20 years as corporate secretary to the Board of Directors of Children’s Hospital.
The principles of family caregiving
Last year the FCA established the following principles on family caregiving. 1. Family caregiving concerns must be a central component of health care, long term care and social service policy making. 2. Family caregivers must be protected against the financial, physical and emotional consequences of caregiving that can put their own health and well-being in jeopardy. 3. Family caregivers must have access to affordable, readily available, high quality respite care as a key component of the supportive services network. 4. Family caregivers must be supported by family-friendly policies in the workplace in order to meet their caregiving responsibilities. 5. Family caregivers must have appropriate, timely and ongoing education and training in order to successfully meet their caregiving responsibilities and to be advocates for their loved ones across care setting. 6. Family caregivers and their loved ones must have affordable, readily available, high quality, comprehensive services that are co-ordinated across all care settings. 7. Family caregivers and their loves ones must assured of an affordable, well-qualified and sustainable health care workforce across all care settings. 8. Family caregivers must have access to regular comprehensive assessments of their caregiving situation to determine what assistance they may require.