Grief: Adrift on a Sea That Has No Direction

Grief must be the most insular of all emotions. Adrift on a sea that has no direction. Each time we grieve, for each person we lose in our lives, it is entirely different. It depends on the relationship we had one with another. Losing a parent, a grandparent, a sibling, a lover, a spouse, a child, a pet, etc. each creates vastly different emotions. I expected to feel the pain born of losing a parent even though I was only Dad’s daughter-in-law. I got it full force.

I knew it was coming long before anyone else did. He and I talked long and often about his desire to go to Heaven. We read the Bible and prayed over it together. He reaffirmed his faith in the Father, the son and the Holy Ghost. In our own ways, we prepared one another for what was coming… that Dad was going… soon. Over the last couple of weeks of his life, I silently grieved as I watched him slipping further away.

I never could have imagined that I would feel two entirely different types of grief. It was impossible for me to prepare myself for the overwhelming sense that I have lost a child. No one ever mentioned that I might feel this way. When you are the caregiver of someone who suffers from the latter stages of Alzheimer’s, you are caring for a child in so many ways. This child is entirely dependent on you for everything. You are solely responsible for cleaning, changing, dressing, feeding, teaching, protecting and loving them.

When you suddenly lose that child that’s inside the parent, there is a void that is staggering. How different your life becomes. How different my life became. For the first time in 3 years, I can leave the house without making sitting arrangements. I can go to the grocery store and not buy the staples that were such a part of his daily diet. (I can’t bring myself to go down the ice cream aisle for fear of dissolving into tears at the sight of his favorite tubs of vanilla.) I no longer have to go to the pharmacy here (seriously, I use to go at least 4 times a week).

I can’t begin to tell you how much I miss hearing him say, “I want my mommy.” I even miss the times he acted out because at least he was here to do it. On the morning of him being gone a week, I awoke in tears. I was saddened by the thought that it was the longest I had been apart from him in 3 years. I was blown away by the thought that each day would irrevocably take us further apart.

Before I had time to adjust to these changes, God moved me hastily forward. Dad died on Tuesday. The following Thursday, Mama passed out and fell. She busted her knees (both knees with chronic problems) because she went straight down on both knees as she lost consciousness. The impact was hard enough to cause compression fractures in 3 vertebrae and she broke 3 toes. I was there that night. I couldn’t have dreamed I would stay a week and a half. I couldn’t have guessed at the number of questions that would be answered while I was home.

Life is already changing at lightning pace. Mama needs more help than she would ever admit. We have a lot of loose ends with our home, jobs, school, etc. We have finally come to the conclusion that we are going to approach life from a rather unorthodox angle. I am going to be home in Florida from Saturday night until Tuesday morning. It will allow me to work my regular Sunday and Monday nights at Peggy’s and take care of the many things that are requiring attention at home. It will enable me to have time with Richard, Jeremy, Jordyn, Melissa, the kids, etc. Then I will be in Gulfport from Tuesday afternoon until Saturday afternoon with Mama. It will give me a chance to have the best of both worlds.

I am home now. For the first time in 3 years, I am in our own home. As much as I miss Dad, I do NOT miss the daily reminders that this was his home and we were just guests here! It’s odd to realize I don’t know if I’ll ever be a fulltime resident here again or not.

For a long time, people have asked me what I was going to do when Dad died. I never had an answer because I didn’t know what life would have to offer me. Now I do know. At least for now, I will be dealing with cancer as well as the aftermath of dealing with dementia.

New Orleans Is Next to Heaven

I know I have been absent for a while. I can honestly say that I have been completely and utterly overwhelmed by life. When life is coming at you, all at once, from every angle, it gets hard to put thoughts in order sometimes. There is also the unbelievable exhaustion that is caused by the mind that seems to be playing catch-up with the body (in my case, the battered and bruised body). But, the longer between writing the more I need it, if for no other reason than to exercise my demons and short comings.

I was blessed to get to go with Mama (and my sister) to her first Radiation Oncology appointment. Hearing the hope and BELIEF in this doctor’s voice that we could buy Mama some time with radiation and chemotherapy led me to set up a non-profit organization that will help pay her medical bills. I named it “Hope for Ann” and so far, we have raised almost $4,000 in less than a month! A dear friend, Terri, organized an all-day benefit last weekend, that enabled us to raise over $3,000 alone! Unfortunately, it is only a drop in the bucket of her mounting medical bills.
Mama and I had a long talk and I plan to keep “Hope for Ann” going for a long time to come. We will single out one person at a time, with terminal cancer, and we will raise funds to help them pay their medical bills. Some of my amazing friends have offered to embark on this journey with me. I can never thank them enough for their love and support. I can never thank EVERYONE involved enough for all they have done and are continuing to do.

I also have to mention that I planned to shave my head bald as a show of solidarity for my mom. She vehemently opposed the idea so I chopped all my hair off to donate to Pink Hearts Fund http://pinkheartfunds.org a group that makes wigs for children with cancer. My youngest daughter did the same as well as a couple of our friends. I am also now the proud owner of a white ribbon (for lung cancer) with my mom’s initials tattooed over my heart and my oldest daughter is sporting a new tat of a white ribbon on her foot. Solidarity at its finest!

Dad has had more ups and downs than are even imaginable. For the most part, he was doing pretty well… until I went out of town. I was given a trip to Colorado for the wedding of one of my “adopted” kids. One of the biggest honors of my life was getting to stand in as the “mother-of-the-groom” and it was truly one of the greatest trips I have ever taken in my life. I will cling to that always. As is the nature of a caregiver, I have to force back the feelings that so much could have been avoided “if only I hadn’t left him”. I left on Sept. 21st and returned on the 24th. What a difference a few days can make!

The week before I left town, I took Dad to see his primary physician. He changed his medications and it was decided that we would switch to hospice as soon as our time with home health ran out. A couple of days before I left, Dad’s beloved physical therapist, Helen, had to tell him that it was her last visit. That was a very hard day for both of us. Helen and I have become friends and she was the first person I told that we were calling in hospice. Dad was aware enough of the loss that he acted out horribly the rest of the day. His world had tilted out of balance and he knew it. Now, add to that the awareness that I was going out of town (most importantly, I wasn’t going to Ms. which he is used to) and throw in the fact that I had my oldest daughter come from out-of-state to take care of him. I mentioned to a couple of people, the doctor included, that he always seems to get sick or injured if I go away and prayed that things would be okay here while I was gone.

God has his own agenda. Apparently, he was doing alright on Friday and Saturday but then on Sunday, he only wanted to sleep. That afternoon, he went to the bathroom and fell. My husband, Richard, had to get him up and back into bed. He didn’t eat and barely drank anything all day. That evening, my daughter called concerned by that and the fact that he hadn’t taken any medications that day. I told her to wake him up and make sure he drank a full glass of water and ate a banana while taking his evening meds. She did and he went back to sleep as soon as he was done.

On Monday, he again fell. This time Richard had to call the EMT’s to get him off the floor and back into bed. After monitoring him for over an hour, they decided to not take him to the emergency room. Other than a small abrasion on his lower back, he seemed unharmed. Richard picked me up at the airport and told me what all had been going on in my absence. I didn’t even make it to the car before I knew we would be going to the ER that night and told Richard so. The 45 minute ride home seemed to last hours and I had to control the mind blowing urge to scream, “Hurry!” every few seconds.

I threw my bags aside as I came through the door. When I got to his bedroom, he was trying to push himself back up onto the bed, repeatedly scratching his tailbone on the side board. I grabbed him and called for Richard. When we had him fairly secured on the edge of the bed, I called for an ambulance. After a couple of hours, a bottle of fluids for dehydration, and several tests, it was determined that he had a small crack in his tailbone, multiple abrasions and bruises, but there was no reason to admit him.

The doctor (who we have dealt with many times over the last 9 or 10 years for both Mom and Dad) came in and knelt on the floor beside my chair. He looked me in the eyes and told me that he believed the medication changes were responsible for the falls. Then he asked me something I will never forget, “Take all his diseases and conditions and add them up, now multiple them by losing the person you loved an entire lifetime, then divide it all by 90… would you really want to keep fighting?” I told him that the orders had been signed to start hospice as soon as home health ran out. He suggested I call them both the next morning.

Just like that, we were discharged under one and admitted to the other. It truly couldn’t have been an easier process. Where home health was a tremendous help while Dad was still getting around and fairly self-sufficient, he had progressed beyond their functions. Hospice swept in offering help, supplies, resources, etc. For the first time in 3 years, I know that help is a phone call away and will be until the very end. It is nice to feel less alone in all of this.

The downhill spiral he took while I was gone continued until he was bedridden and slipping farther into his own mind. His Sundowner’s has taken a predictably bad turn over the last couple of months. At app. 4:30 pm EVERYDAY, he becomes increasingly delusional, belligerent and hostile. He invariably stops recognizing his home and anyone in it and is convinced that we are holding him here against his will. He is uncooperative and can physically lash out. He asks frequently where Mom is and why I am keeping her from him, unable to remember that she died in 2010. Eventually he begins to whine that he wants to go home. When asked where home is he replies, “New Orleans”. It wasn’t until last night that he mentioned that Mom always said, “New Orleans was next to Heaven” so he needs to get there to be ready to go. I remember my Grandmama telling me she wanted to “go home”. I remember how peacefully she did. I thank hospice for that and I thank them for their support again.

Last weekend while we went to Ms. for the benefit, Dad was moved to a local nursing home for 5 days of Respite care. Medicare pays for this service for 5 days every 90 days through hospice. Remember that caregiver burnout I was headed for back in Aug.? It finally caught up with me. The break was a great thing for both of us. We couldn’t believe how good he looked when Richard and I arrived to pick him up. He even fed himself all of his lunch while they processed his release. Unfortunately, he thought he had been arrested and that he was in jail. But the gratitude and genuine affection he showered Richard with at “breaking him out of this sh*thole” was nice to see.

He seemed to be in great spirits as we got him home and settled. But as the afternoon shadows lengthened outside, I watched him fade slowly back inside his demented mind. He obviously didn’t recognize me as I searched for ways to stop his mental retreat and by bedtime, we were both exhausted beyond belief.

He is belligerent a lot of the time now and has become increasingly violent toward me. He insists he can do things like standing on his own but he starts to fall if you let go for even a moment. He tries to scoot out of the bed without calling for help and gets stuck halfway through the process. He can no longer do anything unassisted and that frustrates him to no end. The other night, he reached out a hand to me with a smile. When I took his in mine, he yanked me down to him and smacked me in the face with the other one. Instantly, his smile was replaced and a look of absolute hatred replaced it. I jerked away reciting a litany of, “It’s not him, it’s the disease” to myself. I have to recite it a lot, especially when my old bruises have new bruises on them.

Today started early, about 4:45 am. Dad started calling, “Hello? Hellllllooooo?” I struggled to break free from the sheet on my makeshift bed otherwise known as the living room sofa as his voice rose in volume. He had wet the bed and needed cleaning, changing, and to go to the bathroom again. His speech was blurred and he was very unsteady, completely unable to do anything at all. Once clean and dry, he instantly fell back asleep.

He slept until the nurse’s aide arrived to bathe him. He is concerned that he missed the school bus today despite reassurances that today is a teacher planning day and there was no school. He believes he is a little boy and is waiting for his mommy to get home from work. When the nurse arrived she asked him how old he was, he replied that he was 56. When she asked where he was, he said he was in his home. When she asked where his home was, he said in England.

The rate of deterioration seems to be hurtling us ahead at a lightning fast pace. He is slurring his words and he is beginning to forget how to eat. Drinking water from a sippy cup with a straw is beyond him most of the time. He frequently chokes on food or drink. We are past the point of hoping for good days. Now, we can only hope for good moments. The washer and dryer are in near constant use, loaded with sheets, blankets and pajamas. Note to other caregivers: I have finally given up on the bottoms unless he is up and in the wheelchair. He was going through them faster than I could wash and dry them. It has also lightened my load because we aren’t struggling in and out of them all day, every day.

After seeing him today and helping me get him onto the potty chair, our nurse has decided to order us a Hoyer lift. This is an assistive device that allows patients in hospitals and nursing homes and those receiving home health care to be transferred between a bed and a chair or other similar resting places, using hydraulic power and slings. My back is thrilled at the thought of some relief. Moving a 6 foot tall man who weighs app. 195 pounds would take its toll on anybody. Moving said man all by oneself is possible but unbelievably difficult.

Hospice has come to my rescue. They have provided me with all the medical equipment I need to provide the best care I can here at home. They take care of his prescriptions, his Depends, wipes, pads, razors, shaving cream, medical supplies, etc. If we run low on anything, all I have to do is call and they will deliver it to me. They send someone to bathe him 3 times a week. We have an assigned nurse who is gentle and caring when dealing with him (which is a couple of times a week).
{Sometime & a wrenched back later} They just delivered the Hoyer lift. Whoever designed that thing obviously never considered its use with someone who suffers from severe incontinence, Crohn’s Disease & Prostate problems. This can only get more interesting. I will do my best to keep you posted.

Squamous Cell Carcinoma is One of the Dirtiest Things I Know

Well, here we are. Dad’s mental state is deteriorating noticeably. He has this annoying new habit of laughing to himself when he disagrees with anything that is said to him. I never knew a laugh could sound so painful… so hateful. He is becoming more paranoid and delusional daily. He frequently has no idea where he is and asks why we “brought him here to visit”. He is transported back in time to Louisiana and believes he still lives there. It isn’t uncommon for him to ask me to “take him back to his bride”.

Physically he is doing amazingly well. Ask anybody that knows him and they will tell you he looks better than he has in years. If you were to ask his doctors, they would tell you that he is in remarkable shape for someone with his list of physical conditions, diseases and age. He is frequently referred to as a medical miracle. It’s as if his physical state is improving as his mental state declines.
Tomorrow, we will go in for yet another surgery. Dad has squamous cell carcinoma on his right ear, again. They will do Moh’s surgery and it will be gone… until the next time.

This past week we found out my mother has squamous cell carcinoma. It’s not on her, it is inside her. She has lung cancer. It wasn’t there in April when she had a CT scan because of pneumonia but it is there now in August. I wish to God there was a treatment like Moh’s that could fix her as easily. Hers is inoperable. We are so in need of a medical miracle here. What a difference it makes to have something like this inside your body rather than outside it! I hate that I am here and not there. I hate that I constantly end up feeling like I am letting down someone in my life, someone that I love. It is all part of the curse/blessing of being a caregiver.

For those who may not know it, my mother spent the last seven years of my grandmother’s life as her caregiver. She devoted herself to her mother. She gave up her home, her time, her everything to be there and care for her mother. We lost Grandmama 5 months ago. Needless to say, Mama has been killing herself trying to settle her estate, deal with all the little things that have to be done, all while dealing with her grief. As she has physically deteriorated, we all assumed it was just a part of the insane stress she has been under. We never guessed there was a time bomb ticking inside her.

Caregiver stress weakens the immune system. A weakened immune system allows things like cancer to grow. I can’t help wondering if there isn’t a direct correlation between the amount of stress and the rapidity of the growth of her disease. I am so frustrated and angry at something so far beyond our control. But I do know that those feelings, too, will eventually pass. Isn't it odd how much of everything in our lives depends on the passage of time?

My mother is one of my heroines. She is one of my best and dearest friends. She raised me and my little sister as a single mom in an era where we were the minority. Very few of my friends growing up lived in a one parent household. If they did, it was usually because a parent had died, not divorced. Mama worked for a pittance and struggled to provide for the three of us. She held her head high and did the best she could (with much help from her beloved parents). She taught me that I can do anything I put my mind to as long as I believe in MYSELF. Most importantly, she loved us.

Over the last five months, I have thought to myself countless times that Mama finally has an opportunity to LIVE. She can finally live her life for herself… she can do the things she has never been free to do… she can live a life where she doesn’t have to answer to another living soul. I’m a bit pissed off that a stupid disease is invading her and trying to knock her down. It is a strong reminder that life is too short. It’s a shame it takes reality biting us in the butt to remind us that life is ALWAYS too short!

I have often said that I come from a long line of Steel Magnolias. It is strong, female, southern stock that always seems to rise like a phoenix amidst the ashes of circumstance. Yes, I know I am somehow mixing metaphors but I also know that the people who read this will completely get my meaning. I also know that there is always a chance my mom will beat this thing simply because she is who she is and she is a Steel Magnolia.

If you know my mother, you know what a great person she is. If you don’t know her, I sincerely wish you did because your life would be enriched by the acquaintance. But whether you know her or not, I ask that you lift her up in prayer, kind thought and wishes. Every little bit helps. And we all need a little help sometimes.