Support, Prayers and Love for Harvey and Yvonne

Have you met Frontal Temporal Dementia?

According to the Alzheimer’s society, “frontal temporal dementia (FTD) refers to a group of disorders characterized by progressive nerve cell loss in the brains frontal lobes or its temporal lobes.” FTD has no known cure, and very little education behind this disease. Frontal Temporal Dementia is a rare disease in that it typically occurs at a much younger age than other forms of dementia.

Of course there is the scientific definition, but FTD is so much more than this simple explanation. To put this disease into our own words is something that cannot be achieved in one sentence; but if we had to choose it could be described as grieving the loss of your loved one, while they are still living.

To the outsider, the individual may appear normal and “the same” as the outside appearance has not changed, but if you sit and listen quietly, you will meet Frontal temporal dementia.

To the outsider, I never truly know how to respond when one asks: “does he have memory loss?” Yes the memory is affected, but in no way does this compare to the other debilitating losses. Some of these losses include, but are not limited to: loss of mobility, loss of appetite, loss of comprehension and broken thoughts, loss of muscle strength, walking, tooth deterioration, loss of “normal” behaviour patterns, loss of finances, and loss of everything that used to bring this person joy. Along with FTD, it is common to develop more diseases such as epilepsy, which my father has also had added to his list.

When I go home to visit I wonder how my dad will be. I wonder if I’ll meet more of the Frontal temporal dementia, or if we’ll revisit the past memories we cherish. I wonder if my dad will greet me, and my children with the given names, or question what town he lives in. The moments that FTD does not completely steal away from us, we can sustain a bare conversation with simple thoughts. I still walk in through that door and think maybe, just maybe my dad will shoot up out of his hospital bed and say “Jenna, the fish are biting, it’s time to go catch a big one!” We then load up our sleds, handmade toilet seat fishing lines, coffee thermos filled to the top piping hot, laughter abound and we head out. But this is all a distant memory, in which I can only tell my children about and hope they will remember grampa like that, instead of their grampa with FTD.

The toll FTD has taken on my mother is immense. She continues to care for my father, even though her head is spilling over with demanding, additional and seemingly never ending tasks.

To the outsider, it may seem like tasks are small as someone with FTD eventually becomes immobile; however my mothers’ days and nights are anything but easy. Some of the many duties I witness my mother attending to include: never leaving my father alone unattended, fulfilling all areas of hygiene (including teeth brushing and changing of soiled clothing and linens), feeding my father food, ensuring it’s properly cut and soft enough so he doesn’t choke, aiding him in walking, getting in and out of bed, and constantly reassuring him he is in a safe place (his home). These are only a few of the many roles she continues to fulfill. She has also had to navigate continuous financial struggles with their locally owned business they have worked so hard their whole life to create. Trying to adapt and manage all of these unknowns and new turns of this disease is challenging to say the least. On top of the challenges with the disease stems financial challenges. My mother is trying her best to navigate my fathers business after being a stay at home mom for over the last 35 years. It may seem like my mother has it altogether, but her health continues to crumble with all of these constant hardships.

To the outsider, it may be easy to assume FTD only affects a person mentally; although this is partially true, FTD affects the physical and behavioural aspects of a person much more so. My parents’ home has now been taken over with a multitude of hospital grade equipment. Medical equipment and supplies have included hospital beds, wheel chairs, custom wheel chair ramps, hospital body lifts, walkers, specialized clothing and medication, the majority of which is paid out of my mother’s personal pocket. The financial debts incurred have been overwhelming to say the least, and this is another stressor piling on my mother.

When describing my mother, I call her nothing short of a living Saint. She will never talk ill of another person, she will never give up caring for my father and she takes all these battles by responding “I just hope that the suffering that God has laid upon me is helping someone else out there who needs it more…” and “he is my husband and we love each other no matter what.” She finds joy in attending Sunday mass at St. Mary’s Catholic Church, but due to the overwhelming caretaking duties of my father, her church presence is limited.

Maybe you have not met Frontal Temporal Dementia face to face, and it is our hope that you will never have to, but maybe you have met my mother or father. Maybe my father has went out of his way to resolve a plumbing issue after hours for you, took you out fishing or helped you out when you were in a bind. Maybe you have met my mother; maybe she has welcomed you into her home, delivered you a warm meal, said a prayer for you or blessed you with words of encouragement during a tough time.

My mother will never go out of her way to ask for help, and her family now worries about these hardships she is facing and her mental health. If you have been blessed to know or even meet my mother or father, please consider helping with a small donation; whether it be monetary or prayers, both are deeply heartfelt and appreciated.

We would like to thank you for taking the time to become even a little more aware of this stranger who has completely altered our families life. Our wish for you is that you will never have to face Frontal Temporal Dementia alone.

*note: Yvonne has no knowledge of the fundraiser; if she knew, she would not allow us to do this. Please refrain from asking her about this, as we do not want to add to any additional stress. We will share all details with her at a later date.