Cared for his wife
Age at interview: 66
Age at start of caregiving: 28
Richard is 66 years old and widowed. He cared for his wife for 29 years before she died in 2004. They had no children. After her death he moved to the USA where he works full time as a librarian at a university. Two years after marriage, Richard’s wife developed scleroderma, and Richard became increasingly involved in her care.
Richard’s wife developed scleroderma two years into marriage, when she and Richard were both 30. From then on, Richard was her primary caregiver. It took ten years for a diagnosis to be made, and through the years the symptoms worsened, and associated conditions developed (pseudo-obstructions, lymphedema, and eventually liver cancer), requiring many lengthy hospitalizations. After 2000, when he began to take respite breaks, he made arrangements for paid in-home care for his wife during his absence, and four months before she died, she was admitted to the palliative care ward of the local hospital for 24/7 care. During her long illness, Richard remained a devoted husband and her primary caregiver for 29 years.
As his wife became increasingly ill, Richard found it very isolating and difficult to lose the intimacy and routines of a normal loving relationship. During the time she was ill, Richard developed a personal relationship with a female caregiver that he met. However, he continued caring for his wife until the end. Richard also found it difficult to navigate social and community activities with other couples and friends due to his wife’s physical and social limitations and his caregiving responsibilities. Richard speaks about the enormous emotional and physical stresses related to caregiving for someone who is severely ill and living at home, even when he was able to hire additional help for her care.
Yet, their time together included advocating and organizing support for other patients and caregivers. Richard found support as a spousal caregiver by joining the Well Spouse® Association (WSA) in 2000 and started a WSA support group in his local area in Canada. At the same time his wife was active in founding or joining patient support groups where they lived. Richard always supported his wife in her work where he could, often taking over for her when she was unwell or unable.
After her death Richard moved to the USA where he works full-time as a librarian at a university-specialized library, and continues to volunteer with the WSA; as such he has been the president for four years and now he is the webmaster for the association. Richard’s mission is to build compassion for and promote healing of those who care for the ill, in particular spousal caregivers.
- Travelling, holidays and respite – RichardAlthough Richard and his wife had to make many arrangements in order to travel, they still went on trips.
- Society and caregiving – RichardRichard came up with a standard response to people’s question’s about Vivienne. Most people, he felt, simply expected her to get better.
- Financial Impact – RichardDespite having good insurance, Richard still paid $17,000 out of pocket for Vivienne's medical treatment.
- Advice for friends and family – RichardRichard says that it is important to listen to the caregiver and let them talk, don’t offer solutions.
- Adapting to new roles and key issues for spouses – RichardRichard met someone else while caring for his wife. He married her after his wife passed away.