Being Mindful of the Caregiver Spouse
Dahlia! She was a lovely, elderly lady with a husband, two daughters and a son. She was 87 when she died. The last six years of her life were spent with a shade being pulled over her eyes and a memory that faded as the setting sun fades on a summer evening. Dahlia stopped eating five years before she died and was unable to remember her family, her friends or those who were the essence of her life. We watched as she slipped away, day by day. And, there was nothing we could do.
David, her husband of 53 years, suffered with Dahlia, minute by minute. He fed her, dressed her, bathed her and saw to her every need and comfort. When her need for care grew greater than David could provide, he admitted her to a long-term care facility and spent most of his waking hours by her side. He was there in the morning to wheel her from her room and in the evening to tuck her into bed. But try as he may, he couldn't cure her or take away her pain or restore her memory. All he could do was be by her side, and that's where you'd find him, Monday through Sunday, sunup to sundown.
Eventually, when Dahlia weighed 67 pounds and lived in a fetal position, she passed away. She passed away with David by her side and her daughters at the foot of her bed. But, Dahlia was lost six years ago when she first started to lose her mind, when her doctors told David that her lack of memory was a sign of things to come. Her doctor tried to prepare the family for her gradual demise but David, trying though he might, could not accept the fact that Dahlia was leaving him and that life would never be the same again.
The funeral was two weeks ago. It had been planned for a long time. Planning a funeral is one of the things you do in anticipation of the time when the funds necessary to pay for long-term health care are exhausted and your loved one applies for Medicaid to pay the bills. You see, David came to see us, at the urging of his daughters, shortly before Dahlia and he moved from their apartment. They moved to a continuing care community where David could live in an apartment and Dahlia could receive care in an assisted-living facility and, as her need grew, in a nursing home.
How we helped protect and preserve their assets
We discussed how best to plan their finances in order to protect and preserve as much of their assets as possible and to prevent their loss from spend down for long-term health care. We drafted estate planning documents for David and a "special needs trust" for their disabled son who was receiving needs-based benefits. We developed and implemented an asset protection plan and generally prepared their finances for the future.
David knew that Dahlia's death was rapidly approaching. He thought he had taken all steps necessary to prepare for her passing. He had two daughters to support him and their families to comfort him. Everyone knew Dahlia would never recover and planned to make her last days as comfortable as possible. As Dahlia's weight declined David knew, pound by pound, that the end was near. Everyone was focusing on Dahlia's needs.
David and I spoke today and as we did I looked at his eyes. There was no life or sparkle in them. His face radiated sadness and the spring in his step that was there before was missing. As we talked about the void he felt, tears came to his eyes as he told me how lonely he was at the end of the day when he got into bed alone. Even though he lost Dahlia years ago - she was never the same as her memory faded - her physical presence was always nearby and that was comforting to him. He hadn't slept with her by his side for many years but the knowledge that she was in the next room or the next building was with him and made sleep easier.
They hadn't spoken in any meaningful fashion since they moved from their apartment a few years ago. But he cared for her, he touched her, he spoke to her and she made his days worthwhile. As all this was transpiring, his family and friends and, yes, his attorney failed to realize, as we cared for Dahlia, what was happening to David. We were not alert, as we should have been, to dealing with his needs and the loss he would suffer and with what was to come.
The impact on the caregiver
Experience tells us that caregivers, especially caregiver spouses, are frequently more vulnerable than the ill spouse. The demands made by an ill spouse, especially one suffering from dementia, often result in the physical decline of the caregiver. It's not uncommon for the caregiver spouse to pass away before the ill spouse. And David was showing signs of decline as he cared, day by day and year by year, for his beloved wife. His daughters did not understand when he spoke about the demands placed on him. They tried to redirect his thinking to Dahlia's needs and never truly understood what was happening to their father.
When we, as elder law attorneys, provide services to families like David's and Dahlia's, we need to be cognizant of everyone's needs. We cannot lose sight of the effect a person's illness has on everyone close to them. As we plan for the ill spouse and for the financial impact that illness has on all concerned, we also have to plan for the caregiver spouse and for the children as well. Our services are not limited to just reallocating the assets or to arranging for nursing home care. We need to have goals in mind for those who survive.
During our meeting today, David discussed the things he used to enjoy doing. We talked about forming friendships and immersing himself in activities of interest to him. We suggested he look outside of his immediate community if he could not find support within it. We suggested the county library as a place with programs that might pique his interest. We told him to look in the papers to see what senior citizens organizations might be meeting. We even suggested that grief counseling or a support group may be appropriate to help him deal with his loss. We reminded him that Dahlia was lost years ago and that only a shell of who she once was remained over the last few years.
How we can help as elder law attorneys
We suggested that he grieved for her long enough. Dalia would want him to enjoy himself the best he could. She would have wanted him to participate in activities, make friends and have fun. We believe it's part of our function as elder law attorneys to help David, and all of our clients, realize these goals. Nothing will ever take away his hurt or his longing. Dahlia is, was and will always be a part of his life. He will miss her day by day and in quiet moments when he lets his thoughts wander. But life goes on and David needs to come to grips with life without her. And we need to be a part of this process and the healing.
We strive to give David the comfort of knowing his financial goals have been met through the estate planning and financial planning he did. We share our knowledge of resources available to help David cope with his new way of life. And, most importantly, we remove the uncertainty of not knowing the right next step. We make sure he knows we are always available to counsel him regarding his personal and financial affairs. We want to give him the sense that even though Dahlia has passed away he is never alone - he will always have help, counsel and friendship.