Someone you love has dementia

Part One: The doctor’s office.

Now that we have enough chairs and are all seated, I’ll discuss the results of this morning’s assessment of Mr. Godhe. The real key to the diagnosis is in viewing the c.t. scan taken last June; about four months ago, wasn’t it? I’ll just pull it up on this computer screen. No, that’s not the right file. Oh, there it is now. This is an image of Mr. Godhe’s brain.

The eyes are on this side. These slides show slices of the brain. Now if you would all just focus on this image. See these black areas? These two areas are just back of the eyes — the temporal areas of the brain. Over here — this dark area in the frontal area — is the executive/functional part of the brain. Then there are the two dark areas here in the centre that are quite large, as you can see. All these dark areas indicate places where the brain tissue has shrunk or disappeared. The brain tissue just isn’t there anymore. Look, I’ll show you an image of a normal brain. I’ll put it alongside the image of your father’s (and your husband’s) brain. Now you all can see that there are no black areas in a normal brain.

Those damaged brain cells cannot be healed. The damage is permanent. The diagnosis is vascular dementia. You, Tanya, are a nurse, so you understand the significance of your father’s condition. It is only going to get worse. It is important to get supports in place. Prepare for further deterioration. We will have to notify the authorities regarding the driver’s licence. We have no choice. You, Mrs. Godhe, will have to monitor your husband’s medications, proper diet, exercise — all those things. There are no drugs that will help at this time. There is a drug you may want your father to use, Tanya, at a later time. You would know about that since you work in a nursing home.

Oh yes, now, Mr. Godhe, you are very fortunate that you have a loving and caring family around you. They will take care of you. My staff will give all of you the written diagnosis and some information to help you and we will inform your family doctor. Good day to you all.

godhes xmas r
Pat and Ivan Godhe at Kelvindell Lodge in Kelvington, Christmas 2014.

Part Two: Personal disaster; what counts as one?

Disaster, n., a calamity, sudden misfortune; Webster’s New American Dictionary definition. I researched the definition to see if I could decide what qualifies as a disaster. It didn’t help much.

Once I ran into a power pole with the cultivator. It was a sudden jolt — of fear, not electricity — but I backed off and went home. I got quite a ribbing from the expert farmer but only my ego was injured. Does that qualify as a disaster?

Once I was hauling manure with our farm truck. The rear wheels on one side sank into the ground when the hoist was fully up. It needed to be held by cables to keep the truck from tipping over before the manure finally dumped out. I felt that I had avoided a real calamity so I went home and never hauled manure with a truck again.

My then 16-year-old daughter, who was always traumatized by blood and needles, was operated on by a doctor without her father’s or my permission or knowledge. It was minor surgery and corrected a problem but the whole episode traumatized my daughter once again. I reported the doctor to the College of Physicians and Surgeons. Did I avert a future disaster for some other person by my actions, or create one for that doctor?

I was always in a hurry so I backed into the hired man’s car. The awful sound of crunching metal remains in my memory. The kindly fellow got a new door, installed and painted it himself and only charged me his costs. It could have been worse, I suppose; maybe even a calamity if the insurance had become involved.

Our dairy cows suddenly started bleeding for some unknown reason. One of them died so we hauled it to the university veterinary college. Diagnosis: sweet clover poisoning. Our silage pit full of clover was off-limits for feed the rest of the winter — a misfortune regarding our winter feed supply.
In 70-some years, many things happen to a person. That’s life, isn’t it? I could list so many times when I felt that disaster had struck. But having lived through those times and putting them in the past, today I cannot really label them as disasters. Finally I arrive at the most recent disaster that comes to mind.

This episode makes me feel that my whole life has changed. I am unable to plan activities that take me away from home for a long time. I used to visit friends and family, take classes, participate in conferences, workshops, retreats and other interesting events. Now those things take so much extra planning that it does not seem worth the effort. Even though everyone tells me there are many resources to help me through this difficult time, I am still the one who has to make the hour-by-hour, day-by-day decisions. I feel isolated among all my so very supportive friends and family. That isolation puts me in such a bad emotional state that maybe this qualifies as a personal disaster. Maybe that is how you know it is a disaster — by just how bad it makes you feel.

Many people have had to face a disastrous medical diagnosis about a loved one. My husband has vascular dementia.

godhe bros r
Ivan Godhe, second from left, with his brothers, left to right, Mel, Ray and Andy.

Part Three: Travels with dementia

A diagnosis of vascular dementia left our family in something of a tailspin. Some limitations meant our future plans and activities needed adjustments. After some thought, I decided that a visit to my husband Ivan’s brothers in B. C. was a good thing to do because the doctor said his disability would only get worse. I felt that we could still make the trip at this stage of the disease.

Let me make things clear right off. We are not seasoned air travellers. Arrangements were made for a month’s stay in March. We went to Calgary to visit our daughter and her family. She booked our round-trip flights from there to Abbotsford. When the day came for our departure, a savvy grandson took us to the airport. Those terminals require miles of walking. It became evident that a wheelchair was essential; he arranged it. Halfway to the departure gate, I needed one for myself. I collapsed at the waiting area, surrounded by our numerous carry-ons. Savvy Grandson had been allowed to help us to the gate; once he had safely deposited us there, he wished us a safe trip and left.

It was a long wait. Bathroom services were required. Assistance was required. Do we drag the many carry-ons 100 yards back down the corridor? WestJet personnel accompanied Ivan to the washroom while I guarded the luggage. The flight was called and we were boarded first. The in-air time was only an hour. Thank goodness the Abbotsford airport is small. A wheelchair awaited us at the jet’s door. I couldn’t keep up as my husband was wheeled into the waiting room to be greeted by his brother. We had managed to fly to B.C.

The next day we visited the other brother, who was obviously in very bad health. Overnight he entered the hospital. Two days later he passed away. Thankfully, Ivan was there to say his goodbyes. Toward the end of our month’s visit, we participated in a memorial service. In the meantime, we prepared a historical tribute and in the process reminisced about the brothers’ lives together through the years. It was a good therapeutic activity for the brothers who were left.

Soon it was time to fly back to Calgary. The Abbotsford end was easy. Savvy Grandson was to pick us up at the Calgary end. We got there early due to a tailwind. WestJet people left us at the luggage carousel. I pulled off our bags and grouped them around Ivan. Savvy Grandson wasn’t there yet. Ivan needed the bathroom. It was a half-mile away. I pointed and off he went. I sat surrounded by baggage. After a lengthy time I looked around the corner. In the distance, Ivan was wandering back and forth. I yelled to him. He heard and started toward me. That’s when I saw the 50 luggage carts just behind the pillars. I got a cart and loaded it. With Ivan guarding it, I went looking for a phone. As I searched for coins, I was so relieved to hear “Gramma Pat!” I vowed never to fly without help again.

My daughter helped us to go once more for a week. Ivan will not be making any more trips.

Part Four: Mixed feelings

Suitcase lies open.
What to pack? I’m told there’s
A room for the taking.

That means no bathroom
Disasters to repair when
I’m really in a hurry

Lost glasses, wallet, shoes,
Carefully packed bag
With extra daily needs.

No more needles, sugar tests,
Shots and pills to manage
And remember every day.

No night-time rambling
Nor stolen foods, empty
Cartons returned to fridge,

Grocery shopping —
No sugars, fruit, milk,
Those forbidden foods.

This is his new home,
Sterile, empty, small,
Room for few things.

Forms, papers read, signed,
Financial matters changed,
Info going both ways.

Our house feels empty.
The centre of fifty-five
Years of work, building

A farm home and family,
Memories of two
Peoples’ very lives.

His memories gone —
Of his parents’ deaths
Fifty years ago,

Of yesterday’s events
And many things that
Happened in between.

Confusion, exhaustion,
But now I can sleep.
And so now I weep.

Part Five: Remember to grieve

Loss is something all of us feel from time to time. Loss comes in so many forms. So does grief. Sometimes we do not even recognize our affliction as such. But no matter what shape grief takes, it is necessary to healing.

You have a loved one who passes. You must grieve. You have a loved one who develops a dementia. You need to accept the anguish it causes you. Suddenly or gradually, in a number of ways, you lose the person you love. That partner in life, helping make decisions, sharing joys and sorrows, all the ups and downs, is no longer able to share with you. A loneliness may come over you when the person who rejoiced with or supported you before can no longer play that role. Remember to grieve that loss. But also remember his or her loss, too.

Paranoia often strikes those with dementia. They may say cruel, untrue and hurtful things. How much anxiety is that paranoid person feeling? How much outright fear? Remember to grieve the pain it causes you. It is the disease of the brain that is to blame.

Sometimes his or her actions are quite laughable. It is OK to laugh. Laughter is also necessary to healing. At other times the actions are frightening, even dangerous. The responsibilities of keeping someone safe can be overwhelming. Nursing care may be the only solution. Making those judgments are part of your responsibilities, part of caring for your loved one. For some there are feelings of guilt. But can one person give the kind of care that a team of professional caregivers can provide? Think about how your own role can then change. There is time to join him or her in fun activities, outings, family gatherings that you don’t have to manage by yourself. Yes, grieve the empty chair or bed. Embrace a different way to interact.

Farmers often cannot stop being farmers. They imagine they are still in charge of those important activities. The horses need to be cared for. Parts for the tractor have to be bought. The truck should be taken to the field. Reminding them that they are retired is hopeless. Some of them never stop asking to go home. One woman related her attempts to take her husband home. First she took him to the home in town where they had spent many retirement years. Within an hour, he wanted to go home. Then she took him to the farm where they had lived most of their lives. After half an hour, he said he wanted to go home. She was out of options at that point. What is home, in their minds?

My reality is with a farmer. Women with dementia will have activities they miss, too. Do they miss home? If so, what home?

Loss causes sorrow and anguish. To heal is necessary to maintain your physical and mental health. Remember to give yourself permission to grieve for your losses and also for the losses your loved one is suffering. Above all, remember the love.

By Pat Godhe

Wadena News


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