Parting

Two and half months have passed since I was at my moms bedside, along with my sister and our husbands, as she took her final breath. I daily relive that moment and all the moments I had in her company. My routine of spending several days a week with her over the years leaves a vacuum. My siblings and I were prepared; we had many occasions over the last several years to think her passing could happen at any time as she steadily approached her nineties. But she always rallied. And we sighed and smiled and carried on.

On her 93rd birthday in December mom was spunky, chatty; she ate pizza, and cake. She joked and laughed. She was more herself then, and over the month that followed, than she had been in a while.

Then, in February she wasn’t. Dementia quickly tightened its clutch. We did what we could to console, comfort and calm her, never leaving her side during that last fretful week. It was the hardest thing to do. Prepared but not prepared. Yet thankful to have been there with her.

I gave her eulogy at her service and managed to get through without breaking down. As long as I kept my eyes on my page, as long as I didn’t look into the eyes of the family and friends that were there listening. Strange how grief can become cloaked in the diversions and mechanical elements of taking care of the responsibilities of seeing to the details of funeral arrangements. There is business to take care of, facilitated by having a focused, clear head.

But also I tempered my grief with an understanding that she had been graced with a long and good life and that I made lots of time for her, especially the last thirteen years; that we had a lot of fun together. But grief is a wily thing. Some take solace in a religion, believing they will see their loved ones again in the after life just as they were in this life. I won’t argue on something no one can attest as fact. And I’m not here to question. Whatever gives us peace.

But I have heard the “after life” caveat used as a rational for them not being there with a sick, and also an aging relative. That it’s ok, they will see them on the other side. They say it’s easier to confront death when one “believes.” Maybe.  But it’s certainly convenient.

My personal belief has always been that all living things are eternal energy that never expires. We change, we disperse out of our human form, but always exist. We are a body of elements eternally in flux. I can look to nature, the universe, and know I and all are intrinsically woven, and for me that is my comfort. So, I believe to be with someone while we are here in our physical body only happens here, during this time. It matters more to be with them, right here right now, in this life rather than believing you will be with them in an after life.

Over the years I’ve lost my dad and two of my brothers; had been at their side as they passed. I’ve lost two girlfriends and, regrettably, wasn’t there enough. And with each of these passings my convictions have only strengthened. Be here now with the ones you hold dear. And whatever religious belief one follows or doesn’t follow grief will find some way for release. Realization settles down in us that we will never see that person again.

The other day a girlfriend posted that her younger brother suddenly passed away.  Words under the photo of her brother that commented on ‘the happier times we all once spent together, and now, today, all we talk about is how much we loved him’, undid me. Triggered my grief, and I gave way.

I miss my dad and my brothers deeply. I can’t call on them anymore – and I carry a regret for not valuing  the time with them more fully while they were here.

I miss my mom deeply, and I continue to see her face and hear her voice, her laugh. And, like a phantom limb I reach to touch, I feel I should right now be at the senior village visiting her, after all weeks have gone by, I’ve been away too long – but it has slowly, solidly sunk in that that isn’t my life anymore, because she is no longer physically in my life anymore. But she was, and I claimed as much of it as I could while she was here.

 

 

Mothering Mother

I have an elderly mother who I am very close to. She has outlived her first husband my father, of 58 married years, and also outlived her second husband of four years; he was eighty when they married. She has outlived two sons and a daughter-in-law. My mom is ninety-three, she suffers from dementia and lives in a full care facility not far from me.

I spend many days a week with her, helping her to eat her lunch because she can no longer manage cutlery on her own, and stroll her in her wheelchair around the hallways because she can no longer work her chair on her own. I listen and nod as she talks, although the words and sentences no longer make sense. But she is looking at me and smiling while she talks, seeming to understand what she is wanting to share. That’s enough.

Care facilities are, by another name, a place of endings. A constant reminder that nothing is going to get better. Any changes my mom experiences are going to be for the worse. Her new milestones are reached but not celebrated, only solemnly acknowledged because they aren’t the milestones of progress as when we would watch, for example, our children reach theirs; first tooth, crawl, steps, school.

The milestones of my mom are milestones of Lasts. I was trying to remember the last time my mom was able to get into my car and go out for a drive to the beach she loved, where we used to go frequently; sometimes picking up some burgers and park the car facing out to the water, eating and talking, watching people walk their dogs. Then, when was the last time she walked, the last time she fed herself, the last time she knew my name.

In the past six months her Last’s have increased exponentially, and each last brings her closer. And I know it’s coming, the day, and it will break my heart in a million pieces when it does. But I know that my heart can remain full in knowing I gave her as much as I could, did what I could. I was there, as I am now, to comfort her from the fear and confusion that stole her peace of mind; like a parent reassuring a small child that all is well there is no monster under the bed, I am here.

I take comfort in that she had a long life. Has. And I do focus on the positives she can experience in her days; when she does engage in conversation, when her never failing humour will slip in when least expected and we can laugh together, and her never ending gratitude extended to everyone with ‘Bless your heart’.

I also ask myself how could I come to mourn someone gifted with living well into their nineties when my two nieces lost a father, and another two nieces and a nephew lost both parents when they all were young? I can’t. But I will. Regardless how long or short a time we have them with us.

Yet living to such an advanced age is what we all desire- we couldn’t do more, and if you have your adult children around to look after your care and quality of life, that is the best of what we could hope for in life. How can we be sad when they pass? Of course we are still sad. Losing a parent at any age will carry its weight of grief.

It is all still hard, because- she’s my mom, and I’m bracing for The Day, as I braced for the day when my father, and then my brothers each passed from cancer. With my mother’s dementia it is a long and lingering goodby as, piece by piece, parts of who she is take leave, what remains is a shadow of who she was.

My part is to be her touchstone, that maybe deep within her memory she knows she’s not alone, that she knows she has her family near to keep the night-light on in her dark room.

 

 

 

 

#Mom

My mom just celebrated her ninety-second birthday on December thirteenth. Much of my blog content has included experiences of facing the realities of an aging parent, something I never gave a second thought about when I was in my thirty’s. Taking for granted that my parents had each other and they would always as they grew old. Together, in their own home. But of course, it doesn’t play out like that. After fifty-eight years of marriage they separated with dad passing away from cancer at age seventy-seven.

And although mom remarried at seventy-nine, four years later she was widowed again.

When she was eighty-six we took a road trip to Cardston to visit family; this is when I felt the magnitude of understanding that my mom is now all alone. I witnessed how unsteady she was in the morning, that her memory wasn’t as sharp. That no longer is there anyone to wake up to in the mornings, or say goodnight to at the close of the day. She was living alone in Parksville, an hours drive from me, and it gave me concern. I’ve already written about how I managed with this in other blog posts, so I’ll just say it has been a journey.

The last nine years in spending so much time with her has enriched me more in ways that I couldn’t have expected, leading to an even deeper bond with her. Our mother-daughter relationship became a friendship. We talked about everything, laughed a lot, went on drives; and she shared many thoughts and experiences from her life that now as an adult I can appreciate. I was discovering her as a woman, as an individual.

And all of it comes with heartbreak. Watching someone you love slowly lose ground with advanced aging impacting mobility issues, but coupled with dementia; knowing all the things you know about them that they no longer know about themselves, nothing can prepare you. It is the stage in which the child becomes the parent and the parent becomes the child. But instead of watching your “child” growing vigorous and branching out, you’re watching the regression.

Dementia is a thief. Shrinking an entire life into only immediate confusing moments, each forgotten as quickly as they come. But thankfully, over the last several years it has robbed her slowly. If one can be thankful for such a thing. I am thankful in having had the time to spend closely with her before the disease progresses further. As it always does, as it’s doing now. Thankful again that she is imbued with grace and humour, and optimism. This at least hasn’t waned.

Three months ago my sister and I have finally managed to move our mom down from the care facility in Parksville to one in our city of Nanaimo. A move we attempted over two years before when she moved out of her townhouse, but complications arose that kept her in Parksville. In the years since she’s been widowed we’ve done our best in keeping our mom integrated in our lives, and I think we’ve succeeded, short of having her live with one of us. Which, if one of us could have done, we would have.

 

 

 

Round About

We’ve come full circle and as life is certainly a beautiful thing it is also ironic.

In our effort to have our mom moved from up island down to mid island so to be closer to us, her children, we in six months:

Searched out and found new mid-island accommodations in an Assisted Living complex right next door to my sister, prepared her mentally for her relocation, organized the move, garage sales, packing, putting things in storage, sold her car, set up her new apartment, helped her settle in and become acquainted and comfortable with her new surroundings. One month later-boom-in the hospital for moderate complications, which then developed into more complex issues, 3 falls, 2 behavioral melt downs, my sister, brother and I taking shifts to be with her every day for what became a three month hospital stay, advocating for her care, meeting with hospital liaisons, watching her status change from Assisted Living to Full Care in what seemed like no time, then having to move all her things out of the Assisted Living apartment she had recently moved into and put her household back again into storage, then waited for her placement in a full care facility, up Island.

What just happened?

She could afford the private assisted living at $3,000 a month but wouldn’t be able to afford private full care at $7,000 a month, if she could then she would’ve stayed at the complex she was at, she would’ve picked wherever she wanted, but she must take subsidized care for a nominal cost and go where ever the health authority says there is room. And that room was back up island.

The day of the move to Trillium Lodge my brother, sister and her husband and I were with her the entire day till dinner time. She was teary at times, and scared, but the staff were rallying, encouraging and welcoming. We took her outside to tour the grounds, the gorgeous out-door courtyards and gardens that are secured and easily accessed with automatic sliding doors- a big deal for my mom, to feel she can go outside when she likes, especially now that she can scoot herself along in her wheelchair using her feet.

There was a woman playing piano as coffee and homemade cookies were served. We had called a friend of moms who lives nearby and she and her husband came and sat with us, putting mom so much more at ease.

This facility, the lodge, although it is back up in the town she initially moved from, is certainly far better than others that could have been presented. We do have the option, after two months, to ask for a different facility again that is back down mid island, but no, we don’t think so. We’ve done our best and all we could, to have her live close by us, to lessen the constant commuting; to see that she wasn’t alone. We have been committed to looking after her welfare and life quality. That will never change. But we’ve done enough. Because the last thing she needs now is yet another move. And some things are just meant to be. So we’ll let it be.

Truth is she’s in a good place, one that’s familiar to both my sister and I because we worked in nursing in this very same facility 25 years ago. We know the level of care is sincere and attentive even still. And when I called the Lodge the following day to ask how she did for her first night they reported that she slept well through the night, happily ate her breakfast, was cheery and chatted with her table companion and is still, as the day had progressed, doing just fine. No tears. So far so good.

They have a full calendar of events, a great activity staff and tons of outings, and her two room mates are engaging and social. Commuting of course will again be put back on the agenda for all of us, but we can feel all right about spacing them out a bit between my sister, brother and me. Not to be too concerned that she is left alone if one of us doesn’t make it up.

We can all relax a bit now, take some time for ourselves, not worry so much. She’ll make new friends, be busy, in good hands. In good hearts.

What a journey back to where we began.

 

Interloper

Dementia came in and brought its suitcase today. It brought its furniture and all its curios and closed the door on the outside world.

Sheathed in the skin of its host it shone through her eyes with vehement curses, it raised an arm and pushed sincerity and love from its post. Banished all that was once welcome and noble.

It filled in the recesses left there with doubt and defense, with anger. It hissed of betrayals and mocked the heart.

It pulled the shade and allowed no bid farewell.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Ok. It was a hard day today. Hardest. A cruel appointment with this condition that I have yet witnessed. I am reeling as I sit here having come home from the hospital 2 hours ago. I am alone, but I’m all right that my husband is away working. Even though he would be holding me right now with tears in his eyes saying sincere consoling things, I need to be alone. To process. To write. This helps me sift it all through.

What started as a pleasant day devolved into banishment. All of it directed at me, all of her loses because of me. I am the villain. Hearing her speak of me as she did, turn her face away, but it was her taken over by this is what took the breath out of my lungs.

I won’t take it personally, that is ego and it has no place here, because it’s not her, it’s  not me it’s the disease. But still. It was like a hammer.

I lost her today. But maybe tomorrow she’ll be back and I’ll be reinstated to her heart.

 

 

In Care

DK Brint
DK Brint. Taken from the front entrance of  the hospital ~

Half of my days are spent at the hospital where my mother is still residing. She is still waiting to be placed. Yesterday she was moved back upstairs from the Transitions area of the hospital to the hospital’s 4th floor due to concerns over her breathing. Checked over aside from her A-Fib that was acting up they have decided to keep her there.

Better for her, while down in Transitions she experienced two falls in the last week; other patients had alerted the Care Aid that she had fallen- everyone was too busy. Luckily nothing was broken. A few days later after dinner I brought mom out of the lounge and in front of the nursing station so she could be easier watched. I talked with her Care Attendant telling her the reasons and to please keep an eye on her and I left. Between that time and when my sister arrived in the evening she found she had been put in her room, which was a private room at the far end of the hall, because she was crying too much.  The RN said to my sister that she was too busy to attend her, (what about the Care Attendant?) so moved her to her room until she could get to her. The lights were off, she was sobbing uncontrollably in her wheel chair and at risk of attempting to get up on her own- which is why the previous two falls happened.

The floor was continually short-staffed, that’s my polite version anyway. We (siblings) attend her everyday, like a tag team my brother, sister and I are with her from before lunch to the time she goes to bed. We help by monitoring her meals and feeding her- something she now needs done-by assisting her in the bathroom, by taking her outside into the courtyard for fresh air and sun. It’s very boring in a hospital, we keep her company.

Yes we admit to hovering. We are her family, she is our responsibility. And I stress that it’s important to keep vigilant, to be attentive to how the care is going. Or not going as we kept finding.

My sister and I have been Care Aides in our past, working in Extended Care Facilities. We know how it is. We’ve seen parents essentially abandoned. We are present but we don’t interfere in the normal scheduled care or attention from the staff. But will confront and inquire if there are gaps in this. We are her advocates, we know her better, we are in her corner.

 

Placement

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Leaving for the interior of BC for 2 weeks with Bob on one of his work related trips so I can visit my daughter in Kimberly meant leaving my mom in the hospital where she has spent the last 8 weeks. It meant that as she was being assessed for Extended Care and put “On the List” that there could be changes happening while I was away, that when I returned possibly she will have been moved into a Facility, and will need to brace for that emotional impact.

Mom had gone into the hospital 8 weeks ago because her pulse was racing and erratic and blood pressure was very high (we keep a BP device at her place) so my sister had called the ambulance. They got these under control after a few days and then the plan was to get her back home after she gets her strength back.

She was doing well, moving from the “Hospital” ward down to “Transitions,” a place in the hospital where they prepare you to go home, or to a “Home” if your condition changes. All was proceeding well towards mom returning to her apartment we had just moved her into in March.

Then things began to change.

The last three weeks or so she had been weaving stories about her life, a new thing she had begun to do, all pleasant but we knew them to be fantasies, like being a teacher for two years or planting the whole garden that graced the hospital courtyard we spent the sunny afternoons in. She lately began to say she was hired to look after the hospital floor she was staying on. We would tell her that she’s retired now and doesn’t have to work anymore, but she felt under obligation somehow, and we knew better than try and convince her otherwise. She would come back to “reality” and then chuckle over what she had just fantasied.

Regardless of what narrative she was outlining for herself over the previous weeks she was always cheery,  laughed, and could easily be humored. She always went with the flow.

But because of this new fantasy behavior they felt she needed to be reassessed for Complex Care and give up her Assisted Living apartment. We had to agree, so she was put on The List. Because Private Complex care is financially out of reach for her, upwards of $6,000  a month, we would have to wait for an available subsidized bed in a facility- hopefully in our town.

I should clarify that what having subsidized extended care means in Canada is that the government withdraws 80% of ones monthly income, whatever amount that may be, for the Care Facility and its amenities and that you are also bound to accepting the first bed offered – no matter where it is in a 40 kilometer radius. If the found bed is not accepted the elder is put back at the bottom of the wait list and must be re accessed again, the whole procedure taking many weeks to months. But once in a subsidized bed we do have a choice then, but only after two months in the found facility and if one is unhappy with it, to then pick another bed in the desired facility and wait until it comes available.

But that first found bed must be taken to qualify.

While I’m in Kimberley my sister was notified that a 4 bed ward room had been found in our town for mom, and my sister went to see it. Her heart sank when she saw the conditions, and asked if there could at least be a two bed room for her instead, they got back to her a few days later and said they had one.

This was better news and my sister prepared to move mom in, having 48 hours to do this-as per regulation, but sudden behavioral changes that seemed to possess my mom have been nothing short of Jekyll and Hyde. So dark, so fast. Two weeks ago Bob and I visited her the day before our departure and we walked (strolled) around the grounds had some ice cream and left her after a few hours smiling and calm.

 

And because of this new change in mom we had to forfeit the chosen bed as they have now decided she now needs to be re-evaluated, re-assessed for a placement for Aggressive Residents. I know dementia can progress alarmingly, but this was so sudden.  3 weeks ago she was pleasant, co-operative, and social. Her usual self.

I remain suspect of perhaps medications that were conflicting or wanting to blame the other two women who are fully in Alzheimer condition that shared moms room who were always devious and manipulative and at times aggressive, or even an UTI ( urinary tract infection). I still have a difficult time hearing about and accepting my moms condition.

Thinking that not much would transpire in a 2 week absence, that we would still just be waiting for a bed, turns out I had left town during the most emotionally trying time. My sister keeping me informed via texts and phone calls and shouldering the weight of the turmoil, my brothers helping her where they could, and me fretting on the other end. Mom has now been moved into a private room and will stay in the hospital until they can stabilize her behavior and until another placement can be found.

Bob and I will be home in a few days, and although I have tried to stay focused and enjoy the time with my daughter and all the activities we’ve done, I’ve been mentally preparing myself for a return to a changed parent, and the following stages of a long goodbye~