Living w. Alzheimer's can be evenmore difficult on LGBTs

Pinellas Park | Linda Watson and Cathy Oatman live in a nice home in a quiet neighborhood in a lovely house with a well-manicured lawn. Both women are veterans of the United States Army and served in Vietnam. Both have childrenâ┚¬â€Cathy's are adopted from Vietnam, Linda's are from a previous marriage. There are toys everywhere on the day of the interview because they are taking care of Linda's granddaughter. The house is also filled with years' worth of memories.

â┚¬Å”We've been together over 20 years,â┚¬Â says Linda. â┚¬Å”We met as friends many years ago and she used to be my traveling buddy back and forth to Veterans conventions.â┚¬Â

The pair used to have a lot of friends and travel together. But then suddenly their comfortable life together came to a crashing halt. Ten years ago, Cathy suffered a heart attack which was followed by several small strokes. Not long after those debilitating attacks, she developed vascular dementia that eventually turned into Alzheimer's disease and Linda took over new responsibilities in their relationshipâ┚¬â€she became Cathy's primary caregiver.

Bad to worse
As a result of the disease, things started going from bad to worse. More and more Cathy, now 74, started displaying many of the traditional symptoms of Alzheimer'sâ┚¬â€wandering and confusion as to where she was, familiar things were no longer familiar. She often misplaced things and she became irritable and lost her temper frequently. One day, Cathy started a fire in the kitchen while Linda was taking a rest.  

â┚¬Å”She went to put something in the microwave from the refrigerator and forgot to take off the tin foil, Linda remembers. â┚¬Å”I woke up and smelled something burning and ran to the kitchen and saw the microwave on fire and I said â┚¬ËœOh no!'â┚¬Â

The two women start to laugh. Why the laughter?

â┚¬Å”We do a lot of humor,â┚¬Â Linda says. â┚¬Å”We laugh a lot because you can't take things personally. You can't. You just have to let it roll over and just know that it's the situation. So we laugh a lot, because if you don't, you can go crazy.â┚¬Â

Cathy was diagnosed to have the later stages of the diseaseâ┚¬â€somewhere between Stages 5 and 6. She is also battling Stage 5 renal failure.

Cathy is often filled with anxiety and delusional. She has hallucinations and is often restless. Linda says that her wife got so restless that she walked out of the house and wandered off while Linda was taking her nap.

â┚¬Å”The only time I lay down to take a nap and she wandered out looking for me, and she goes two doors down, walks into their house and sits down,â┚¬Â says Linda, 56. â┚¬Å”Fortunately everybody around here knows us and they came in my house. I was sound asleep in the bedroom and I hear this voice calls out, â┚¬ËœLinda, Linda, we've got Cathy.'

â┚¬Å”That's the day,â┚¬Â she adds, pointing toward the door, â┚¬Å”that I went out and bought these locks.â┚¬Â  

Day by day
Cathy is in good form the day of this interview. Linda believes that her two-year-old granddaughter helps keep her partner active and alert, but there are days when Cathy can't even get out of bed and it can take up to two people to get her out of bed to bathe her.

â┚¬Å”For the last couple of weeks she has been doing really well, but tomorrow morning we could wake up and things will be very different,â┚¬Â Linda admits. â┚¬Å”So every day brings a new challenge. The thing with Alzheimer's is that you never know what the day will bring. Every day you can start over and wipe the slate clean because it's going to be a new day.â┚¬Â

Most of the help Linda gets is from the VA. Medical supplies, emollient lotions, diapers and the much-needed medicine which helps to slow down the progressive nature of the disease are readily available. For Linda, caring for Cathy is almost a 24/7 job. She tries to get rest when she can, but it isn't easy.

â┚¬Å”We're on a home-based primary care through the VA,â┚¬Â says Linda.

The VA provides everythingâ┚¬â€even day care at a local VA facility. But even with that care, there is little time for Linda to rest.

Day care days are the days she does her shopping and other important errands. She has a woman come in once a week to clean the house and a person to assist with Cathy. All of the day-to-day costs of medicine and other much-needed supplies would be astronomical, but because they are both veterans, all of their materials are covered through the VA.

Like many people who suffer from Alzheimer's disease, Cathy's long-term memory is in great shape, but her recent memory is bad.

â┚¬Å”She can recall all of the songs and the ditties from World War II and things like that,â┚¬Â Linda says, â┚¬Å”but you tell her something right now, and within five minutes she'll forget.â┚¬Â

Slowing the inevitable
There are many different types of drugs to help slow the progression of Alzheimer's disease, but nothing will stop its progression. Aricept is the most popular prescription and is used during the mid- to moderate Alzheimer's disease stages. Cathy is on Rivastigmine, which is a patch, but sometimes it causes nausea, so she has to get off that medication once in a while in order to eat.

Linda is exhausted, but she stays with Cathy because she loves her and she made a commitment to her. Both women are legally married in Canada, but because of the anti-marriage laws in Florida and the United States, they had to set up separate legal documentation to protect themselvesâ┚¬â€including Medical and Durable Powers of Attorney.

â┚¬Å”Get a Medical and Durable Power of Attorney now, don't wait!â┚¬Â says Linda.

The Medical Power of Attorney is a document signed by a competent adult, the â┚¬Å”principal,â┚¬Â that designates a person whom the principal trusts to make health care decisions on the principal's behalf should the principal be unable to make such decisions.  The Durable Power of Attorney is important because limited and general Powers of Attorney are terminated when the principal becomes incapacitated.

Florida law provides for a special Power of Attorneyâ┚¬â€the Durable Power of Attorney which comes into effect when the person can no longer act for him or herself. With this document, the person who has Power of Attorney can manage, decide, sign and act on the principal's behalf.  

Finding community
Linda misses the days that she and Cathy used to spend as a â┚¬Å”typicalâ┚¬Â couple. But one of the things Linda misses the most is going to church. She and Cathy used to go to the King of Peace Metropolitan Community Church in St. Petersburg where they could experience a sense of community, but even the short drive to their spiritual home was too much, she says, and they've lost touch with a lot of their church friends. Both of the women's families have been very supportive when they can and Linda says that provides some strength. But there are feelings of isolation from the LGBT community

According to Beth Fountain, Helpline Specialist at the Florida Gulf Coast Chapter of the Alzheimer's Association in Clearwater, there are support groups for couples facing Alzheimer's disease, but many LGBT couples may not feel comfortable talking about their relationships.

That's why she and Linda are trying to develop a program for LGBT couples facing the debilitating effects of Alzheimer's disease.

Fountain says that many people who live with Alzheimer's disease experience feelings of alienation and shame associated with the condition. But why, she is asked, has there been an increase in Alzheimer's disease over the past 25 years? She says that's because people are living longer, which means more elderly Americans experience the disease.

â┚¬Å”Alzheimer's disease usually occurs in people aged 60 to 85,â┚¬Â Fountain explains. â┚¬Å”Not everyone gets Alzheimer's. It's not a part of normal aging, but there is some age-related memory loss as people get older.

â┚¬Å”When I was growing up, cancer was talked about with a sense of shame. Now, there are many cures for many forms of cancer. There are no cures for Alzheimer's disease. There are medications to slow the progress, but at this time, there is no cure.â┚¬Â

But until an LGBT group can be established for couples living with Alzheimer's disease, couples like Linda and Cathy will continue to struggle along, feeling isolated with only each other to turn to for love and support.

Those living with a same-sex partner suffering from Alzheimer's disease are invited to contact Fountain at 727-578-2558.