Vacation and Respite

It is not common for me to be delinquent in my posting, but I have been on vacation. At least that excuse is better than "the dog ate it".

Anyway... whenever I take Muddear for a respite stay it is probably more traumatic for me than it is for her. I always worry about how being taken to a nursing home, even temporarily, makes her feel.  I hate to admit it, but this time around I wasn't the least bit worried. During the last couple of months I have been under a great deal of stress - family pressures... school... work. None of which include being a caregiver. I was desperate for vacation. 

Thus, on the morning of Friday, June 28 Mike and I hit the road for Mississippi to my sister's wedding. No responsibilities but us - not only did we leave Muddear safely at Brookwood Retirement Community, we left the kids at home as well. Did we go anywhere exotic? Nope - but we had the greatest time together. From the wedding in a scary little Mississippi town, to caving in Chattanooga, to riding rollercoasters at our local amusement park - I never realized how much I missed spending time with my husband.

Obviously, we're back and the vacation is over. I have promised myself to find more opportunities for us to spend one-on-one time together.

Almost a Fall

Muddear gave us a little scare this morning. She had a "slight" fall when attempting to transfer from her bed to the wheelchair.

While eating breakfast, I was startled by Little Mike calling me to hurry upstairs to Muddear's room. "She fell and I can't lift her!" When I arrived in her room, Muddear was stretched between the bed and the wheelchair, holding on for dear life. Fortunately, she didn't actually hit the floor, so she wasn't hurt - just a little rattled. I think Little Mike was a little rattled himself.

Although a little confused for the rest of the day, there were no more incidents. We have been watching Muddear more closely today and providing more assistance when she attempts to transfer.

Mental Entanglements

It amazing at times the odd conclusions that Muddear develops in her mind. While I am sure Dementia is the driving factor, I often find myself trying to understand exactly how Muddear came to a particular conclusion or assumption.

A few days ago, while we were talking, Muddear expressed her continued sadness over Walter's death. Admittedly, I was shocked to hear that she believed that he had been murdered. I thought to myself... "where did that idea come from?" Especially since a few months ago, Muddear thought Walter drowned. Even at that time, I remember saying to myself, "where did that idea come from?" Immediately, I corrected the erroneous belief.

So there we sat, several days ago talking about Walter's death when Muddear says...

"It's a shame how Walter was murdered."
"Muddear, Walter was not murdered."
"Yes he was!"
"No, Muddear, Walter was not murdered."
"Yes he was! I heard it on the news."
"Muddear, Walter was NOT murdered. He got sick and called a friend to take him to the hospital. He died because he was sick."
"He was sick?"
"Yes. There was NO murder."
"Oh, well that's enough about that."

The conversation ended and life went on. Yet, I still wonder how Muddear becomes so incredibly confused about the events surrounding Walter's death. I guess I'll never know.

Feeling Heavy

This week Muddear has been eating less than normal. Both Thursday and Friday nights, she refused to eat dinner and this morning she refused to eat breakfast. I figured we should have a little talk so I could better understand why Muddear was not eating.

"Muddear, why won't you eat?"

"I'm heavy."

"What do you mean?"

"I'm burdened down."

"What's got you down?"

"You know what it is... the death of Walter, my son. When you go through a tragedy like I have you can't eat. You can't understand."

"Muddear, I'm sure it is hard. But you have to take care of yourself. Your other son, Philip, needs you."

"I know, I'm trying."

At first I wondered if Muddear was confused about when Walter died. Of course, she will never completely heal from the death of her son, no parent would. Yet, I found it odd that this week Muddear is grieving, when she has not mentioned Walter's death in months. I'm not sure how to console her. Back in January when Walter initially died, we would talk about his death, especially when I realized that she was confused about how he died. There were times I would hold her hand. As time has passed I became less inclined to talk about Walter's death fearing the impact the discussion might have on her.

I'll have to deal with Muddear's sadness one day at a time and pray that her spirits will be lifted.

Spiritual Journey of Family Caregiving

Dementing illnesses strip this safety away. Little by little and sometimes in large chunks the familiar becomes unfamiliar. The little things a person unconsciously counts on to clue them in to where they are, who they are, how they should act and what they should expect disappears. The family starts to hear "I want to go home" over and over. What this really means is "I don't feel safe anymore."

Spiritual Journey of Family Caregiving, by Sheryl Karas, 2008

Often, my family and I struggle with how to handle Muddear's frequent confusion. There are many days and subsequent nights when Muddear will repeatedly ask to be taken home or to be taken to a place in her memory. We try many approaches to ease the confusion. Sometimes we attempt to explain to Muddear, patiently and logically, that she is at home. If this fails, we talk about her inability to care for herself, outlining all of the things that Muddear is dependent upon us to do for her thus enabling nursing home free living. When all else fails, we simply state "I know you don't believe me, but you are at home. Let's talk about something else."

The thing that I never understand is why we continue to have this same conversation over and over again. I understand that Muddear has Dementia, the source of her confusion, yet at times I find my level of frustration rising. The questions, never end. The requests to go home never cease. If only, I could better understand "why?"

When I read the chapter excerpt from Spiritual Journey of Family Caregiving by Sheryl Karas contained on her blog, I experienced an "aha" moment. You know, the feeling that someone actually understood the challenges my family and I face as caregivers of a loved one with Dementia. Click here to read the chapter excerpt in its entirety or visit Lulu to purchase Spiritual Journey of Family Caregiving. This non-fiction book chronicles the five years ending in 2005, when Sheryl Karas worked as a Family Caregiving Consultant at the Alzheimer's Association and Del Mar Caregiver Resource Center helping families taking care of loved ones with incurable progressive memory loss and dementia, contains many more anecdotes like the one listed above.

If you purchase Spiritual Journey of Family Caregiving, stop back and comment. I am interested in hearing about your "aha" moments.

Physical Therapy

It has been an overwhelming two weeks. Unfortunately, I have fallen behind in my posting. Shame... shame... shame!

Anyway, Muddear is doing significantly better since the fall. The splint was removed; however, we noticed that she was not using her right leg in a normal manner. Additionally, Muddear has been complaining intermittently about pain in her right foot/leg/ankle. At first I was really concerned, but I began to question the authenticity of the complaints. First, Muddear would complain of pain when she did not want to do something we wanted her to do - like cooperate at bath time. Or Muddear would complain if she wanted us to do something for her - like hand her the box of tissues instead of rolling her wheelchair over to the nightstand to grab a tissue for herself. My doubts increased significantly when Muddear began to state that the pain was occurring in the wrong leg.

Nevertheless, I contacted Muddear's primary care physician about the ongoing "pain". Physical therapy began on Monday, June 2, 2008 to strengthen the injured leg and encourage use. I'll keep you posted on Muddear's progress.

Fall Update

Three days have placed time between the scare of our lives and today - Muddear's fall. Today, marks the first day that Muddear has spent time out of the bed since the fall. Even better... Muddear actually ate two meals today - breakfast and dinner.  Additionally, Muddear's leg seems to be in significantly less pain. Thank the good Lord!

The only down side... the Dementia seems to be doing "something." Exactly what that something is I cannot tell you, but I've noticed a difference. I have watched Muddear become engrossed in conversations with non-existent people. Additionally, she has been asking us to find "James". James is my grandfather aka Muddear's husband who died about 12 years ago.  I find it heartbreaking. Muddear will make statements like, "Please find James, we were together many years and he would never leave me." Once, when I tried to explain that he had passed on years ago, she asked... "Well why didn't anyone tell me he died?"

Hopefully, this is a temporary reaction to the fall and not an ongoing problem. I will continue to keep you posted.