Caregivers at LTS: Karen

“The greatest joy is watching him smile, when he smiles,” said Karen about her father-in-law. “I tell my husband – I just live for that.”

Laughter is one thing about caregiving that brings joy to Karen. Another is taking her father-in-law out to eat fried clams at Red Wing Diner just down the street from her house. The third is having conversations with him.

“He loves having conversation. He has a great sense of humor. If I can just banter back and forth, that makes him laugh. It makes it all worth it for me,” she explained.

Karen’s father-in-law lives with her and her husband in their split level home. They live in the top level and he lives in the bottom level. He has a family room, a living area, a bathroom and a small dinette in his make shift home.

“He’s got everything he needs down there,” explained Karen.

Karen and her husband are the two primary caregivers for her father-in-law, Harvey. He moved in after being diagnosed with vascular dementia and Alzheimer’s disease, and it took a lot to get her father to this point.

Harvey had been successfully living independently in his home since his wife’s death 13 years ago. He had been able to maintain his independence at home for so many years with the help of his eldest daughter. She did his grocery shopping, prepared his meals, did his laundry and helped him with housecleaning. However, his family started to notice a decline. He had memory lapses and frequently repeated the same story. He stopped changing his clothes and caring for his personal hygiene. Things he had been using for years, like the TV remote, became too complicated. The pedals in the car were too close together. He fell frequently and couldn’t help himself up without assistance. The warning signs were all there, and the family knew that he was no longer safe to live alone.

“There were so many indicators that something really needed to change, but that’s such a complicated thing,” she explained. “We knew it was going to end up taking an event to get him out of his home because he was so unwilling to do anything else.”

That event came in October 2011, when Harvey’s daughter found him on the floor of his home. He had suffered a stroke which put Harvey into a Boston area hospital for a week and into rehab for two more months. It was there he finally received an official diagnosis. A CT scan and an MRI revealed the tell-tale amyloid deposits that indicated Alzheimer’s disease, and he was given an additional diagnosis of vascular dementia.

Her spouse assumed the role of Power of Attorney and Health Care Proxy, and they began to transition her father-in-law into their home, despite objections from people who advocated for an assisted living facility or a nursing home. For Karen and her husband, it had been an easy decision. Before the dementia and Alzheimer’s disease had set in, the family had agreed to take her father-in-law into their home if he ever lost his ability to live independently. This was a conversation that her father-in-law had actively agreed too.

“Years ago my husband and I had offered to have Harvey come and live with us if the time ever came that he was no longer able to live alone. It became very evident to all of us that he could not go home by himself, and that he needed to come live with us,” she said.

Eventually, with help from the rehab employees and her family members, Harvey agreed to move in with them That’s where her work experience at Long Term Solutions became incredibly useful. Karen is a nurse care coordinator at LTS, so she works all day long helping families address the care needs of their loved ones.

“My experience at LTS helped me in so many ways,” she explained. “I knew exactly what needed to be done in order to have Harvey come live with us. I knew what equipment we needed, what adaptations would need to be made to provide safety in bathing and toileting, and I knew the questions to ask and where to find resources.”

She credits her colleagues at LTS with helping her find lists of local agencies to provide her with home health aides to help care for her father. They provided her with contact information and email addresses to multiple aides in the area.

“I was even able to find a geriatric nurse practitioner who would come to the house… the employees at LTS were so helpful,” she said.

Her husband went to work measuring assistive equipment, putting up grab bars, and making the downstairs as accessible as possible for her father-in-law. They had almost everything in place, when were told that Harvey didn’t have the appropriate diagnosis for insurance to cover a hospital bed.

“The care coordinators in rehab, a lot of times, they don’t know all of the answers. For instance, I was led to believe if the physical therapists ordered the hospital bed, it would be covered. I found out about a week before he was discharged that he didn’t have the diagnosis for that,” she said.

Another physical therapist suggested looking on Craigslist.

“Our daughter who I lovingly refer to as the ‘Craigslist Queen’ was able to locate a used hospital bed for us within 15 minutes,” she said laughing.

With the hospital bed in place, they were ready to bring Harvey home.

“That first day arriving at our house, Harvey was all smiles, and he was so glad to be with us. That lasted about 48 hours. He slept all night the first night. He was so pleased with his caregivers, the food, our dog, and he even liked our cat! I remember coming to work that first day after Harvey moved in saying how smooth the transition had been.It was amazing! However the next day I came to work singing ‘the party’s over’.”

Harvey was no longer so pleased. While experiencing sun-downing, he gets angry and lashes out at Karen’s husband. He can say many hurtful things about being kept a prisoner in his home. Harvey has moments of confusion and agitation, and he can feel lonely and fearful. He needs help with almost everything, toileting, changing his Depends, showering, and walking. His left foot was affected by his stroke, and the dementia and Alzheimer’s make it difficult for him to remember how to walk. Harvey rarely sleeps through the entire night, and Karen and her husband monitor him with a baby monitor. However, there are things he can do himself, and Karen is working hard to allow him the dignity of doing what he can do on his own.

Karen and her husband have two caregivers for 12 hours during the morning, and they manage caring for him at night. To avoid stress, Karen and her husband go on a date once a week. They make sure they have an aide for every Friday night. They take vacation when they need to. They just took a two week vacation in January, but it’s difficult for her husband to take time off.

There is still an amazing amount of stress involved, even with these breaks. It’s a combination of financial stress, selling her father-in-law’s house, family dynamics, and other things.

“These past three months since Harvey came to live with us have been filled with adjustments for him and for us. Harvey no longer talks about going home to his house, he feels safe with us. He seems to be more settled being in our home. My husband and I have learned so much. This journey, traveling deeper into the world of Alzheimer’s is full of the unknown, it’s dynamic. Just when we think we understand it, it changes. It’s full of fearful moments and joy-filled moments. Whatever it is, we are traveling the road together, supporting and loving one another. To provide care for him is a privilege we would never want to miss. My payment you may ask? It’s Harvey’s smile! ” she concluded.