Milestones For Mom

We have hit another milestone. Our middle child leaves the nest- really leaves the nest, tomorrow at 2:30 pm. She lived an hour away during college, and two hours away post- college, but now she will be 26 hours away. She leaves for El Dorado, Arkansas to teach 5th Grade Language Arts, alone. She is much braver than I. This move is fulfilling a dream of hers. She has always wanted to try southern living. She is fascinated with southern food, homes, entertainment, climate, and culture. At 26, there is no better time than the present and she wants to give it a go. I’m proud of her, but I will miss her more than I can talk about.

Our son warmed us up. He moved to Florida at 18 and met his future wife. After a brief stay with us, he joined the Navy and the family moved across country to Washington State. I could hardly breathe as the moving truck pulled out of the driveway. I just love having my babies nearby. From there, he was stationed in Florida and is currently serving a year deployment in Bahrain. In December, he, his wife, and two children will head to Japan for 3 years.

I’m proud of my two older children. They are much more courageous than I am. But I’m not going to lie, I will miss them so very much. I suppose it would be much easier if I didn’t like them at all, but they are pretty great kids with humungous hearts, a desire to succeed, and a true appreciation of God’s creations. They want to explore. They want to see the world. They want to experience all they can, while they can.

Our youngest was married in May and lives just 2 miles down the road. This is our saving grace. She and her family will help to fill the emptiness the other two leave. That is a blessing. I don’t know if I could handle all 3 of them gone just yet. I know it’s unhealthy, but I’d give anything to have them all living together on our 7-acre property like a commune. I just love having them all around me. That is when I am the happiest. When they are all around me and getting along, there is nothing better.

This has initiated a thorough cleaning of the house. We have taken 7 trips to Goodwill, and it really doesn’t show. We just look neater. Anything of any sentimental value has gone into totes that are housed on the shelves of the garage. The totes are labeled and the kid’s most precious memories are safely placed until they are in permanent homes. Then the totes will be theirs. It has been an emotional process- much more than I expected. However, it has felt good to organize and clean our living space.

There have been tears. There will be more tears. This transition- the final transition of the children moving completely out, spreading their wings to far away places, and decision-making about what goes, what stays, what is most precious, and what is not, has been necessary. It’s part of letting them go, part of making the house ours, and part of preparing for the future. I have appreciated the help from my favorite man, and we have enjoyed reminiscing as we carefully make final decisions.

Today, we thank God for our babies…our friends. May God place a protective covering over all three of them and their families as they find their way, and may they always remember that their Mom and Dad love them more than life- forever and always.

Brand New Beginnings

The Bobolinks have arrived in Maine and have taken refuge in one of the fields on the farm. We had a “hot date” at my brother’s recommendation and walked into the field to listen to the songbirds and their offspring that have settled in the hayfield. They are migrant birds that will travel 4-5 times around the world in a lifetime. They orient themselves with the earth’s magnetic field and use the starry night to guide their travels. It makes me think about new beginnings, and change, and how exciting and terrifying it can be.

This week our daughter was offered a fifth grade position, teaching Language Arts in El Dorado, Arkansas beginning August 1st. She will leave in 3 weeks. We are excited for her, because she is following her dreams and there is no better time to give it a go. She is excited and terrified, and we are proud and sad. It would make it so much easier to say goodbye and send her off if we couldn’t stand her.

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In August, our son will be back in the states to reunite with his family in Florida for a couple of weeks. In December they will be heading to Japan for 3 years. They may not make it home for a visit between his time in Bahrain and leaving for overseas and this has been another hit to this Mamma/Nanny Bear. I miss them all so much and I’d give anything to spend some time with them before they have to leave.

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It’s been a month and our youngest continues to do well with her new family. They are going to be spending much of the summer on Matinicus Island, off the coast of Maine, while he fishes for lobster. Thankfully, they live close by and we can get baby snuggles quite often. Our youngest grandchild will be 6 months on the 26th and we continue to be amazed at how well our daughter has adjusted to motherhood. She is a natural.18921801_887382721399939_7680284345950009597_n

So many new beginnings…

It makes me think about the Bobolinks and their love songs, their magnetic pull to the earth, and the night sky that guides them home. I can’t help but think about how those birds relate to how I feel about my babies and how deep my love is for each and every one of them. I truly believe that the magnetic pull that connects our souls will always bind us together and that the stars will bring them home. My prayer is that they will know that their father and I, like the Boblink would circle the world 5 times over to get to them, because we love them beyond what words can express. It is my prayer that we have been successful at preparing our sweet “Boblinks” to take flight, and that God will provide us comfort as we step back and encourage our babies to fly.

 

 

Dementia Ed From The School Of Hard Knocks

Sometimes I write to encourage or entertain. Today I write to educate and inform. Most of what I have learned is by reading and asking more questions than professionals care to answer. My desire is that by sharing our story, we might help others in similar situations and explain what my husband is facing. I have learned a whole lot from the school of hard knocks.

We are at 4 years 2 months since the time of diagnosis: Frontal Temporal Dementia: Semantic Type or Behavioral Type (they aren’t quite sure), most likely exacerbated by Traumatic Brain Injury. This diagnosis came after blood work, MRI’s, CT Scan, office mental exams, and 2 lengthy cognitive exams interpreted by a Geriatric Psychologist and Neurologist. If I had a quarter for every time someone has said, “But he LOOKS good…”

Actually, he is doing really well at the moment. We had a little glitch in early April and he ended up in the Emergency Room for the 3rd time since school started in the fall. The good news is that it wasn’t for blood pressure this time. The bad news is that he wasn’t urinating much at all. What he did pass was very dark and I was scared. I lost my cool at the doctor’s office, swinging a sample, crying, convinced his kidneys were shutting down. The hospital was thorough, found no real change and wrote it off to “a dementia thing”.

What I am noticing is that his body systems are shutting down slowly. It makes sense. If the brain is the conductor (like an orchestra), and the systems are all at the mercy of the leader, why wouldn’t they all be affected? This is what I notice:

Digestive System: My loved one suffers from acid reflux and is lactose intolerant. This can be tricky, since he craves milk, cheese, and ice cream. It is common to develop an impaired sense of smell, which interferes with the sense of taste. However, at this time, my husband is enjoying food, especially sweets and coffee. This makes me smile, because he has traditionally been drawn to salty and could walk away from sweet. Bowel control is also adversely affected with dementia and some incontinence has occurred on and off over the past year- both at night and during the day. Loss of bladder control occurs with the disease and is very common.

Neuromuscular System: People with dementia exhibit a subtle, gradual loss of neuromuscular function — such as declining dexterity and balance. My husband is often unsteady, sometimes losing his balance and needs to lock arms or hold my hand. The stroke a year ago has made him even wobblier and dizzy, so we have to keep a watchful eye. In unfamiliar places, he walks behind me and follows my lead. He also suffers from chronic migraines, which are treated every 3 months with Botox. He jokes that when he dies he will be wrinkle free!

Circulatory System: Reduced circulatory system response to changes in body position can create dips in blood pressure upon sitting up or standing and has resulted in a condition called orthostatic hypotension. He has been diagnosed with this, but my sweetheart generally suffers from blood pressure that is too high and is currently taking 5 different medications to control both his Bp and cholesterol, and is also taking baby aspirin each day.

Nervous System: Depression often accompanies dementia, and sleep disturbances are common. The early diagnosis was depression, which led to a mid-life crisis where my favorite man was self-destructing. At this time, a low dose of depression medication does the trick. However, another part of the nervous system is the eyes. Affected by the dementia- my husband has lost his peripheral vision and his eyesight is deteriorating. Huge gatherings and noise, especially in unfamiliar surroundings are terrifying. He often shivers or stares. He has to work hard to process, and as a result, often recognizes only close family during those times.

Excretory System: The most basic part of this system is the lungs, kidneys and skin. An accessory organ includes the gall bladder. My loved one’s kidneys are compromised, most likely caused by long standing hypertension. During our last ER visit, we also found out that he has gallstones. As long as they don’t bother, we won’t mess with them.

Respiratory System: Snoring is a form of sleep apnea, in which, people stop breathing for a few seconds or several minutes dozens of times in an hour. Any disruption of breathing during sleep can affect the brain. Researchers have found that people with sleep apnea tend to develop memory problems and other signs of mild cognitive impairment.  My husband now sleeps with a CPAP machine. However, he struggles with either sleeping all the time or not sleeping at all. He wakes often and just stares out the window, or he gives up and goes into the living room to watch TV or play on his IPad. We have tried essential oils and melatonin, but neither seem to make much difference. In the past, he has had respiratory testing and received nebulizer treatments. He often breathes erratically or has difficulty catching his breath when exerted.

Skeletal System: Although dementia doesn’t appear to affect the skeletal system, lack of judgment does. Dementia patients have a difficult time thinking about the big picture, and sorting through cause and effect, and he is accident-prone. As a result of many accidents and near death experiences, my guy suffers from arthritis, which is an inflammatory disease that damages joints. In his case, it affects his neck, shoulders, hips, and knees as a result of injury and operations. He is a great weather reporter.

Muscular System:  The 650 muscles in the body control walking, talking, sitting, standing, and eating. They also help to maintain posture and circulate blood, as well as produce more subtle movements, such as facial expressions, eye movements and respiration. Since my husband’s stroke 1 year ago, we have learned a great deal about how dementia can impact muscles, and how difficult it is to retrain your brain to talk to your muscles. However, I am happy to report that he is out of the wheelchair and walking with an AFO brace.

Endocrine System: The endocrine system consists of hormone secreting endocrine glands such as the pituitary, thyroid, adrenal, pancreatic and adrenal glands. This year, my husband has been diagnosed with multiple adrenal tumors. These can affect blood pressure spikes. In our case, the adrenal specialist doesn’t think they were related or that the tumors need to be removed.

Immune System: There is some indication that there may be a correlation between the immune system and dementia. Some research suggests that people with a certain form of immune disorder can have symptoms of frontal and temporal lobe dysfunction, which include “impulsivity, behavioral disinhibition, poor memory, attention, and planning.” In the case of my favorite guy- all I know is that he catches everything that comes anywhere near him and it is always much worse than the rest of us experience.

Integumentary System (Skin):  “The integumentary system has a variety of functions. It may serve to waterproof, cushion and protect the deeper tissues, excrete wastes, regulate temperature and is the attachment site for sensory receptors to detect pain, sensation, pressure and temperature.” A number of years ago, my husband was diagnosed with oral cancer, which is thankfully now dormant. There doesn’t seem to be a link between the skin and dementia. However, I wonder about the link between the cancer and his immune system?

Lymphatic System: “The lymphatic system is part of the circulatory system and a vital part of the immune system, comprising a network of lymphatic vessels that carry a clear fluid called lymph directionally towards the heart.” The everything is connected to the everything. “Primary Central Nervous System Lymphoma (PCNL) may cause dementia. PCNL is a type of non-Hodgkin’s lymphoma that typically occurs in the central nervous system. This type of lymph node cancer may originate in the brain, the spinal cord, or even the eye.” Thankfully, this doesn’t appear to relate to my favorite man. However, it is recommended that individuals seek regular physical and neurological examinations to detect symptoms of lymphoma.

Reproductive System: There is a correlation between between both acute (i.e., one time, one occasion) and chronic (i.e., long-term) alcohol consumption and low testosterone. Although, it appears that this issue is not specifically dementia related, the results of the disease created self-destructive behavior that in part, may have been a contributor to the Low T.

What caused my husband’s dementia? After a great deal of reading, I have a few theories. It is theorized that exposure to toxic substances in the environment could be causing the disease. He and his siblings lived down the road from a dump that burned EVERYTHING. As a result, they all suffer from varying ailments. Individuals with a previous head injury seem to have a higher likeliness of developing the disease and he has hit his head 4 significant times since 2002. I believe that chronic uncontrolled high blood pressure has played a role, as well as alcohol abuse, and the high amount of prescribed medications over time- especially for depression.

At this time, he is still highly functional. He remains independent, needing subtle assistance and modifications. He is verbal and involved, although he tires quickly and needs frequent breaks. There is so much that he can do and help me with, and it is important that he feel needed, appreciated, and valued. I spend much of my time building him up, reminding him why I love him and acknowledging how cared for and protected I feel. He is still my 51 year-old husband of 30 years, my partner, and the father of my 3 beautiful babies. I am thankful that the disease is moving slowly and subtly, thus allowing us a great deal of time to make memories that we will hold on to for our life times.

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A Bo-Bo, a Baby, and a Bride

It’s been a crazy Spring on the mountain. I had my toes operated on over April Vacation, and after 2 rounds of antibiotics and a whole lot of bandages, I still am not back to 100%.

The bumps that I had on my toes have been replaced with scar tissue that is numb to the touch and tender. I still wrap them to wear a shoe, so I am in sandals 99.9% of the time. It’s not miserable, just irritating. It could be so much worse, and I am thankful that it is over. Hopefully they obliterated the root systems so that I don’t have to go through that again. However, I am somewhat suspicious that my cute little podiatrist from India just wants me to keep visiting. Perhaps we should set up a coffee date instead of another appointment. She is truly adorable.

19029568_10213010930050249_6967951911087829994_nThe baby is such a blessing. Our youngest grandchild lives just 2 miles down the road- just close enough to send home when she’s fussy, and close enough to swipe for baby snuggles, giggles, drool, and to play with. She is 5 months old and loves snatching our glasses off our faces, sucking on our chins and giggling up a storm. What a sweet blessing for our family! Red headed and blue-eyed, she is the apple of her mother’s eye. It is most fun to watch our baby with her baby. Amidst all of life’s stresses, our daughter displays patience and nurturing beyond her years. We just couldn’t be more proud.

Our Anniversary… We celebrated our 30th on the 23rd. I always psych myself up for these occasions, and then they pass just like any other day- a bleep on the radar actually. Only our 30th was a big deal to us. Two years ago I prayed for this day. After we received the diagnosis, I feared we wouldn’t make it this far. So, May 23rd was a milestone for which I am truly thankful. We celebrated at home alone with chinese take-out in our quiet home on the mountain.

18699545_10155428390978184_5732466872041376072_oThe month of May was filled with wedding preparations. Like the conductor of an orchestra, our oldest daughter did all the planning. She designed the baby shower & wedding, organized family members by assigning specific responsibilities , and in the end, honored her little sister by pulling off a beautiful ceremony. The highlights of the day: a family dedication and a Daddy/Daughters dance with both girls…just in case. I honestly don’t know what we would have done without her help. She took so much off our plates and we will be forever grateful. 18952629_10213010929850244_6252858089937748770_nWe now have extended family that not only includes a son-in-law, but a new step-grandson, which brings our grandchild total to 4.

More than anything, we are so happy to have our children doing well and getting along. It brings such joy to see our girls enjoying each other’s company and playing with the children together. Our son and his beautiful bride will be reunited in November and then their sweet family of 4 will be headed overseas, provided they all pass their medical exams. Although they will be gone for 3 years, they will be together and that’s what matters most to all of us. Bahrain is a long, long way from Florida.  Secretly, I had hoped they would surprise us for the wedding…wishful thinking, but I admit I had hoped. I miss them so much, my heart aches. I’d give anything to have them nearby.

But just like that, we have entered into June. In 8 days I’ll be home for summer vacation. I’ll teach summer school, and help my favorite guy around the house. I’ll mow, and weed, and take lots of visits to the ocean. I’ll eat too much ice-cream, watch our favorite movies and TV series over and over, and catch a few naps in the sunshine. I’ll look forward to baby snuggles, and visits with friends and family. We will reminisce about days gone by, and look forward to the days to come.

I am determined to take one day at a time and to notice each and every bountiful blessing.

 

 

 

 

 

Every Little Thing

th-1I found my glasses today. I lost them in the raspberry patch last summer. I looked for them on repeated occasions. Others joined in the hunt. A neighbor even brought over a metal detector. We had no luck, so I gave up and ordered a new pair.

This morning, we were inspecting the plants to see what made it through the winter. I looked over and there they were. They were laying in the dirt, still in tact, with little sign of damage, having withstood the brutal elements for nearly a year. I am thankful to have them back.

Recently my husband and I have been forced into reliving a very challenging and painful part of our marriage in order to encourage another couple. It was during the child rearing years, when my husband was working for the company he helped to manage. Life was very busy and our house was very full. Some of the events I have not thought about for quite some time and it has illicitted a variety of emotions.

And then we found the glasses. I can’t help but think about how we, like the glasses, have  withstood lots of trauma- hard, pounding trauma that just never seems to let up. We have had to dig and scratch for everything and often can barely keep our head above water. Why is that?

For my own sanity, I have thought about this long and hard.  I understand that there may be multiple reasons why adversity is allowed: to discipline, to prune, or simply because we live in a fallen world. I get that. But why do bad things happen to good people? My daughter suggested that maybe people like me are hand-picked to do what is needed. Maybe God knew that I’d remain faithful and be the advocate that I need to be for my family. Maybe it’s not about me. Maybe he has allowed challenges, so that others can learn by watching? If that is true, that puts the pressure on to be a quality role model. It makes me wonder if my behavior will encourage others in the future? Maybe my example could save a marriage? Maybe, like Job, the Lord wants to know if I mean what I say, even when the heat’s turned up? I have no answers as to WHY, but I have faith that every little thing will be okay, and today this calms my soul.

So, on this happy day- the day that my glasses have been found relatively unscathed, I can’t help but feel hopeful that in the end, like the glasses, I will be okay despite the weather.

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What about me?

I have been fighting the dumps this week. Honestly, I think that part of it, is the time of year. It has been dreary and gross out all week, mud season has begun, yet we still have snow on the mountain. What has melted is revealing dog waste, rocks in the grass, broken twigs and trees around the border of the property. Even the mailbox looks pathetic as it leans a little too much to the left.

Maybe it’s the fact that we are in the month of “when all bad things happen”. My heart hurts. People are getting on my nerves. I am jealous and a little angry. I am exhausted. The yard matches my emotions and I want to find a hole to crawl in. Our “affairs are in order” and now we just muddle through from one doctors appointment to the next. Waiting. Watching. Praying. Trying to live and enjoy the time we have left. It’s lonely and it stinks.

He looks forward to coffee and treats. So that’s what I bring him. His world is shrinking. He is lonely, but he doesn’t want to go anywhere. Going to functions is exhausting. People say, “He doesn’t act like anything is wrong.” It is true. He rises to the occasion, then he goes home and crashes. Sometimes it takes as long as a week to get him back to his normal. He silently stares, plays his game over and over on the iPad, and can’t finish any thoughts. He sleeps all the time or he doesn’t sleep. Organs people can’t see are malfunctioning and deteriorating. He looks fine, but what is seen is not what is broken.

This means that MY world is shrinking. I go to work and I come home just as soon as I can. I pray that he is safe, I FaceTime him at noontime, I encourage a nap, and ask for his Bp. I remind him to eat. I tell him that I love him over and over. I teach, go home, then teach, and go home. That is what I do.

Today I wonder if God is mad at me. I look around and see happy families, and I am jealous of their perfect worlds- or so it seems to me. It seems like some people never experience adversity. Everything is perfect- “a perfect little woman with a perfect little man, with a perfect little family, that live in a perfect little house and drive a perfect little car, going to a perfect little job, where everything is perfect.”

I have cried most of the day today. I am sad. Gut wrenching sad. Like it or not, my husband is dying and I have to figure out what in the world I am going to do and I don’t want to. I don’t want to lose my favorite man. I don’t want to have to go on alone. I don’t want to sell the house. I don’t want to move on. I am angry. I am angry at God because he could fix it with one nod, and he is choosing not to. How could anything GOOD come from losing my husband?

Today’s  solution: we went on a hot date to the car wash, then we took the long way to the ocean. We walked the foot bridge, enjoyed the crisp sea air, people watched, and took in some natural D. It always makes me feel better. I have stopped crying, have put some coffee on, and am preparing to go back at it again tomorrow.

I think the thing that is the hardest right now is that I have spent a lifetime making sure that everyone’s needs have been met: my parents, my children, my husband. What on earth am I going to do when it is only me? Who is going to worry about me? People ask me what I need and I have no idea. I’m just sad, angry, scared, and tired, and I cannot stop. I have to take this journey whether I like it or not, and I don’t.

Dear Younger Me,                                                                                                                                          Don’t waste one single moment, because the rug will be pulled out from under you in a split second. It isn’t fair, but it’s going to happen. Get ready.                                                       Be brave, Me

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BRACING MYSELF

It seems that I am always bracing myself for something: the next storm, school year, evaluation, birthday, or trip. When you are a planner, and you can’t organize the next big event, it feels terrible. It feels like quicksand under your feet. Most of the time, I can get my footing. Most of the time I can find the inner strength that I need to face the next hurdle. Not Thursday.

Something is not right, and I know it.

I took my data to the doctor before the office opened and waited. Nobody would listen. I wasn’t heard. I just needed someone to say, “You are right, something is wrong.” I needed to be heard. Instead, I was treated like a student in crisis. I was placed in seclusion, I was double teamed, spoken to in gentle tones, and given next steps I didn’t want to take. I left in tears. We spent the day in the Emergency Room, I missed another day of work, and we still don’t know what’s wrong.  Tests, tests, and more tests…

Three days later, I am still tired. You know that tired feeling you get after a hysterical cry? That kind. I wish I could brace myself, but I don’t know what I am bracing myself for. Something is wrong. I know he is a complicated medical patient. He is full of arthritis, has a beat up rotator cuff, and he still wears a leg brace from the stroke last April. We have to monitor his blood pressure three times a day, has compromised kidneys, as well as multiple adrenal tumors, and now gall stones, on top of having dementia. But why isn’t he urinating? I am not a doctor, but I know that what goes in, must come out and why is it so dark? Where on earth is it going? The ER docs say that maybe he has a virus that is absorbing it. Huh? He doesn’t feel sick. He isn’t bloated.

I am bracing myself for something, but I don’t know what, and I am terrified.

He eats very little. He says he feels full all the time. He drinks all day long. He sleeps a whole lot. However, he is still quite active. He keeps the laundry done, he loves to cook, and the house is immaculate. He has started plants in the basement, and has refinished some of our furniture, as well as a couple of beat up pillars in the entryway. He plays solitaire on his iPad, follows news stories on the internet, and enjoys watching TV series with me in the evening while I correct papers. He seems to have become more sensitive to milk, so dairy can be disastrous. However, it doesn’t stop him from ordering a strawberry sundae when we go for a drive to the coast, or insisting on a tall glass of milk with supper. He is mostly happy, and looks forward to me being with him, so I get home to him just as soon as I can.

I wish I could protect him. Although I pray for a miracle, I accept his diagnosis. But I’d be lying if I said I wasn’t scared. I just want him to be comfortable, and for him to pass with dignity when the time comes. I want to do what is humanly possible to have him go from one life to the next, pain-free, peacefully surrounded by those that love him most.

Tell me, how do I brace myself for the day I lose my best friend, my soul mate, father of my children, and the keeper of my heart?

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