Dad Has Dementia

Five weeks after Dad died, Mom moved to New Mexico to be near me. Through serendipity and the kindness of a stranger, we were able to find her a patio home just four blocks from our house. I'm grateful for how things have worked out, because while Mom lives 'independently,' the truth is she needs help with everything but her activities of daily living. From bill paying to house cleaning, I'll be doing it -- so it's nice that I can simply walk over to her place to help out.

The big questions now are: Where do we go from here? And what have I learned from my experience with Dad?

I'll take the latter question first.

If I had it all to do over again with Dad, would I do it? Yes. But I have to admit I would think much longer and much more seriously about ever moving a parent into my home in the future. If I had lived my whole life in close proximity to my parents and, hence, had a very close, personal relationship with them, maybe I would feel differently...  Read more

I'm normally off on Mondays, and so, every weekend after Dad died, I drove north to Mom's house on Saturday – packed, packed, packed her belongings – and then returned home on Monday. We had three weekends to dispose of 30 years' worth of accumulated tchotchkes, family heirlooms, photos, and everything else.

With no time to hold a yard or estate sale, we instead hauled box after box of stuff to Goodwill. Forty-two boxes of books alone went to the charity. We joked that Mom's contributions would keep the local Goodwill afloat for at least six months. The joke rang hollow for Mom, though; it broke her heart to see so many of her cherished items given away. To help ease her pain, my sister, brother, and I took many items we didn't necessarily want, but Mom felt it important they be kept in the family.

Condensing the accumulated detritus of 30 years and 2,500 square feet into furnishings that would fit into a 1,400 square foot town home proved challenging, but we were able to get it done...  Read more

About a week after the funeral, I lit a Caring Candle here at the Caring.com website in tribute to Dad. It felt good to see that little flame and know it would burn for him forever – at least, forever in my heart.

I'm no stranger to grief, sadly. In the past five years, Lee and I have lost six family members, including both of his parents, our grandson, Lee's only surviving brother, my dad, and Lee's uncle. I was very close to Lee's parents and cried a lot for weeks after they died. And that's what has me concerned.

I haven't cried very much since Dad died.

Granted, I've been extremely busy, focused on packing up Mom and getting her moved. But even in those quiet moments at home, in the evening, when I think of Dad my eyes don't well up. I feel more...numb, I guess. I'm not even sure how to describe what I'm feeling. As one anonymous caregiver so aptly posted in the comments section of my last blog post: "I don't know if I am grieving or if I am exhausted...  Read more

My car rolls down I-25, southbound, the freeway bending behind me like a long black ribbon in the rear-view mirror. I try to focus on the road, but having driven this route nearly 75 times in my life, it’s difficult to concentrate. I’m returning home after helping my mom pack up the family home, in preparation for her move to my state. It’s a five-hour drive, which offers me plenty of time to think.

South of Raton Pass, the northern New Mexico terrain opens up into vast grass plains with mountains and mesas rising in the distance. Buffalo graze to my right; a herd of antelope scatters to my left.

Dad loved this area. To him, it was reminiscent of the Old West, where you could hop on a horse and gallop into the sunset.

So, today, this is what grief looks like: buffalo grazing near the highway and vast prairie grasslands stretching west to the deep green mountain range.

At home, grief...  Read more

My brother arrived the day after Dad died. We went down to the mortuary together to view the body.

Dad looked the same as the day he'd died. He and Mom had wanted us to use a (cheap) direct cremation outfit, so the viewing definitely was no-frills. However, someone had taken time to comb Dad's hair.

The direct services guy explained we had 30 minutes to spend with Dad, and no more. It was the law. The body was un-embalmed. We told him we understood.

We stood alone, gazing at Dad's cold body. Neither of us knew what to say. My brother and I have never been close. We told a few stories. It was only when we turned to leave that we began to cry, and then we clung to each other like two small children. After we left the chapel, we headed home to plan the funeral.

Mom and Dad's relationship was rocky and complicated. I don't think Mom really wanted a funeral, but my sister insisted. As my brother and I sat in my living room, we hatched a plan to create a photo montage of Dad's life to display at the funeral...  Read more

My sister and I sat with Dad's body for quite a while after he passed away. We smoothed his hair and kissed his forehead. It bothered me that his nose hairs were sticking out, so the hospice nurse trimmed them for us. I rubbed his bad leg almost continuously, caressing it. My sister shared stories, humorous ones, about him.

Eventually the body grew cool, and we felt ready to let him go. We called the mortuary, signed papers, and then someone came to take Dad's body away. Later that afternoon, the medical supply company arrived, offered cursory condolences, and discreetly removed the bed, the Hoyer lift, the bedside commode that had never been used. My dining room stood empty. The house was quiet.

My sister had to catch a plane back home at 4:00 p.m. Lee made sure she got to the airport on time.

I wandered aimlessly around the back yard, at loose ends. No tears would come. I admired Dad's tomato plants and thought how proud he'd be of them...  Read more

I thought Dad would live for years with dementia and that our caregiving journey was just beginning. But suddenly, just 10 months after being diagnosed, my dad lies comatose on a hospital bed in my dining room, seemingly near death.

Three weeks ago, he took his walker outside to inspect his tomato plants, do a little weeding, and water the sunflowers. Ten days ago, he lost the use of his legs. A few hours ago, his agitation finally calmed, and he became unresponsive. How did this happen so quickly?

Like most people his age, Dad suffers from more than just dementia. His main health problem is congestive heart failure. However, because Dad's dementia is vascular in nature, it's certain he's been suffering numerous small, silent strokes recently. Could these strokes be the cause of his rapid decline?

My sister's days off fall mid-week, and on this Wednesday she's flown in to see Dad. My brother is making a 14-hour drive on Friday to visit...  Read more

I'm so angry.

Dying shouldn't be like this. It shouldn't be about battling with the healthcare provider in order to obtain adequate care for the patient. It shouldn't be about watching your loved one suffer incredible mental anguish and physical pain. Hospice is supposed to be about palliation, about making sure the patient is comfortable. My dad's the opposite of comfortable.

Our hospice provider isn't doing a thing to help get Dad's extreme agitation under control. Their answer is always to give more meds. And I'm definitely in favor of meds, when they're needed. However, the meds aren't helping.

Dad needs in-patient care, but the hospice provider says they can't locate a facility in which to place him. That's the wrong answer, as far as I'm concerned.

With Dad writhing around in bed, about to go into full-blown combative mode, I call the hospice nurse manager.

"What's the status on placing Dad in a facility...  Read more

Many people think of hospice as a place. In fact, hospice is a mode of treatment that can be done anywhere. In the U.S., in accordance with Medicare guidelines, all initial hospice treatment is performed in the home. Only the 'actively dying' or those with uncontrolled symptoms qualify for in-patient hospice care at a facility.

That's why my home looks like a disaster area. The dining room has been hastily cleared out, its furniture shoved into the living room, which is now uninhabitable. Meanwhile, a warehouse of hospital equipment has been moved in: adjustable bed, hospital table, Hoyer lift, bedside commode, wheelchair.

But it's not the disarray that bothers me. It's Dad. He's out of control.

On this Monday morning, his hospice nurse and I sit on chairs at his bedside. Dad is trying to kick me in the head as he rails angrily about needing to get out of bed. He's extremely agitated and has been this way for the past two hours...  Read more

It's going to be difficult to summarize this in 500 words or less, so bear with me.

When I returned from my disastrous trip to the family home after Father's Day, I discovered that Dad could barely walk -- and was dismayed that no one was taking him to the doctor to treat his ailments. Let me recap.

Dad fell twice in the two weeks prior to my trip to see Mom. I witnessed the first fall, in his bedroom, and assessed him for fractures. He seemed okay.

The second fall occurred about two days before my trip. Lee, coming to bed at 12:30pm, found Dad lying on his bedroom floor, with the light on, his mattress and box spring strewn about. We have no idea how long Dad was lying there – or how he found the strength to dismantle his bed. Nonetheless, I again assessed Dad for fractures, but he seemed all right. Lee (mainly) got Dad up off the floor and onto his walker. We reassembled his bed andnd put Dad in it...  Read more