It's A Terrible Thing To Think But ...

Thanks, at least in part, to Nova Scotia's new Protection of Persons in Care Act, there has been an increase inthe number of reports of incidents of abuse and neglect in Nova Scotia nursing homes.

Not necessarily an increase in incidents but an increase in the reporting anyway.

Another report out today.

Staff at a Nova Scotia nursing home repeatedly left infirm patients unattended while they went for smoke breaks, including one resident left lying on a bathroom floor, says a Health Department inspector’s report.

The three employees at a unit at the R.K. MacDonald home in Antigonish took their seven-to-15-minute cigarette breaks together outdoors on "several occasions" during the May 5-6 night shift last year.

Donna Dill, director of monitoring at the continuing care division of the Health Department, described the incident as "serious" because "if residents are left unattended anything can happen."

"They’re in nursing homes so they’re supervised and attended," she said in an interview.

The inspector wrote that "when the staff were in the courtyard at midnight, an incident occurred where a resident was found on his bathroom floor. The call bell was pulled by the resident’s roommate, who was requesting for the bathroom light to be turned off."

The report adds there "is no indication as to whether the call bell was ringing while the staff were in the courtyard, or had it just been pulled once they were back in the building."

The report said the bell couldn’t be heard outside the unit, which has 39 beds.

Incidents like "a wet, soapy facecloth " being "placed in a resident’s mouth by a staff member while completing morning care" after the resident lunged at the worker's chest and a question as to the appropriateness of a resident's "relationship" with a female resident due to a decrease in the woman’s mental competency in a home which was understaffed are particularly troublesome to me.

And not just because such things are happening to our senior citizens.

We were very close to having my Mom placed in a nursing home. In fact, we had put her name on the list for placement last February. It was just after we were forced to put her back in the hospital last summer that her name came up on the list for her preferred home. Which spot they promptly gave to someone else, citing a need to reassess her given that she was in hospital. Which, by the way, they never quite got around to doing.

At the time, we were quite upset by the whole thing. Earlier that year, my Mom, my brother and I had visited nursing homes in the local area and had all agreed without question that this was the one we wanted. And I'm sure (or I would like to be) that it would have a really nice place for Mom.

But reading these reports of neglect and abuse ... makes me almost think that it was better that it ended as it did. Because although chances are that she would have received as good or better care in the nursing home as in the hospital, I can't really be sure of that now, can I?

Frustration

What's one of the worst things you can do to a person living with dementia?

How about changing the environment? The total living environment, unexpectedly, without any notice.

More than anything else, people with dementia in residential care need to feel safe, secure, occupied, at home and connected to their former lives."

Ms McCann said that in what for these residents is a frightening and sometimes bewildering world of much uncertainty, they need to be helped negotiate a familiar environment that is supportive, makes sense and resonates of home.

Think of it this way ... what if a giant hand were to suddenly and unexpectedly reach down into your home, pick you up and plop you down in a different home? Oh sure, the new "home" may be just as adequate to your needs on an objective basis as the old one but ... how well do you think you would cope?

I can't really blame the hospital. Much as I might like to. I mean Mom has been moved to about six different rooms in just under three months. But I know they are just doing what they need to do. And one of the moves was caused by a shift of the majority of the inpatient units from one floor to another in order to facilitate renovations.

But. This last move. Believe it or not, words fail me ...

Mom has been doing so well mentally for the past month. Quite frankly, we didn't expect her to make it through the summer. She had been losing the battle with MS (multiple sclerosis) over the past year. Struggling with the dementia. And then diagnosed with cancer this past February. She had lived with us for a little over a month in the early summer. But about a month after going into the hospital in the beginning of July, she was doing very poorly. And the doctors told us to expect maybe another week or two.

But once again she bounced back. At first it seemed like she would recover when company would come, only to crash hard each time afterwards. But for the past month, mentally, she has been doing so well.

When I was up to see her yesterday morning ... it was one of those times of really having Mom back again. I really miss my Mom, even though I see her every day. I miss her because even though I physically see her, I can't talk to her the way I use to. As my Mom. To really discuss things with her. The good. The bad. The worrisome. But yesterday, she was so right on.

Then I got a phone call in the afternoon. Mom wanted them to call and tell me that they had moved her to another room. Quite frankly, I really didn't think that much about it. Just another room move. So I wasn't planning on going up that night but when I unexpectedly found myself near the hospital that evening, I decided to drop up.

I was very glad I did. And left there very upset.

If Mom had been an 8 or 9 mentally on a scale of 1 -10 that morning, she was a 3 that evening. The move down the hall had taken that much out of her. In her former room, she was next to the window. There are two patients in each room and we are always pushing for a "window seat". Because when you are in there for the long-term, being by a window can make a huge difference. Especially if your roommate who has the window likes to keep the curtain between the two beds closed.

Well, this had been one of the better rooms Mom had had. Right by a window which looked out on a small garden set in the middle of the hospital buildings. She had a beautiful view of roses and bushes out that window. And of course, the ledge to put pictures and plants on. Plants which could actually grow. Because they were next to a window. I had bought her a beautiful cyclamen and brought in a couple of African violets she had been growing in her own little house. And they loved that window.

So. New room. Next to the door, not the window. All her stuff packed up and shoved in the closet. And Mom terribly sad and confused. I felt her frustration. It was like a physical presence. It became my frustration. And it seemed like the best, the only, thing I could find to help her was to tell her that no matter where they put her, I would always find her. That was guaranteed a small smile and she would respond "Yes, I think you're right".

I did my best to reassure her. To put some of her stuff back out. To tell that she would get use to the new room and would feel better in a few days. And hoped that I was right.

When I went back up today, she was a little better. A little. But she still had this air of sadness and confusion about her. And I wasn't there more than five minutes when she started falling asleep. Which is something she does in phases. So even though I know that it doesn't necessarily "mean" anything, it still hurts. Because it leaves me with a sense of loss, a sense that she is slipping away from me yet once again.

My brother is suppose to be back for a visit next week. And it's highly likely that she is simply "recharging her batteries" as we tell the Blue Jay. Conserving her energy until he comes. I hope so. I pray it's so.

But once again, I walked out of that hospital with some a palpable sense of frustration. Of sadness and loss. Of wanting to have someone to strangle, but no one being there.

Transitions - Accepting Separations

One of the hardest things to deal with at the moment is my mom's general state of unresponsiveness. To my voice. To my touch. To my kisses.

And even worse, even more hurtful, is when she seems to respond just a little more to the Kit Kat and the Blue Jay than she does to me.

"Loss of emotional closeness is sometimes most painful for loved ones as the dying person separates from them. This happens when the one who is sick begins to focus on the process of dying rather than staying alive."

A person near dying has little reserve energy to give back into relationships with even those who are close.

The dying person may not be able to risk vulnerability of growing closer while preparing the enormous task of transitioning.

You can help prepare by letting the sick person set the pace and the intensity of these last days or hours together. A dying person usually does not want lengthy conversations. If he or she needs to separate, allow a quiet time to buffer your need to keep the person close and that person's need to slip past loving ties. Your loved one may want you always near or wait for solitute in which to slip away. You will ease the transition by allowing the person to guide you.

Separating from relationships may be more painful for caregivers left behind than the actual death. Separation is normal for the dying person. Understanding can ease some of our pain, anger and disappointment when a loved one withdraws from emotional connections. Inability to continue relationships suggest a refocusing rather than rejection or loss of concern for loving ties.

. . .

As the dying person decides to separate, he or she may grow calm, peaceful, or remote. Letting go replaces holding on. Stay near and quietly available. Your gentle presence may be all that is needed.

This is the time for family left behind to change focus somewhat.

Comfort and take comfort from others. Allow the death transition and sorrow of losing someone very dear to come to full expression.

Understanding separation as an important part of dying allows acceptance of the dying person's remoteness.

Yet understanding will not stop our feelings of helplessness, rejection and loss.

No. No, it won't. But at least it does help explain it. A little.

The Summer of Our Discontent

It's hard to know sometimes how personal to get on a blog.

But when it comes to what's going on with my Mom, in some ways it's a little easier. If I don't feel like posting about it, I don't. And when I need to post about it, I do.

Driving back from the hospital today, I realized that I am drained. Exhausted. Both physically and mentally. When the Blue Jay was little and repeatedly spent large chunks of time in the hospital each year, I found that I could get through that. Stay with her at the hospital most nights. Advocate with the doctors and the nurses. Work. Take care of the Kit Kat. I could do all that. Until.

Until she came home and was okay again. Then it was my turn to crash. And crash I would. People would look at me and say "But the Blue Jay is fine. What's wrong with you?". They didn't get it, probably never would. I got through those awful times in hospital on pure adrenaline. But the adrenaline surge would always come to a crashing halt just as soon as she came home. Eventually I came to realize that. To know, understand and accept that about myself. It was just how I operated.

Today, in the midst of mentally wondering what the hell was wrong with me, I realized that it was happening again. I suppose that having taken care of Mom in some form or another ever since she was first released from hospital at the end of April to having her move in with us five weeks ago has taken its toll. And now that she is back in hospital, it's time to crash. How predictable. How me.

I thought I had learned to stop beating myself up for these times when I felt so exhausted and so useless. And perhaps I had in the context of dealing with the Blue Jay's world. But it looks like I need to learn how to do that again, to let go and be okay with it, knowing that this, too, shall pass.

Not that it's exactly easy now. It's just that some of the more in-my-face direct stress of caring for Mom physically is relieved. But it's so hard to see her like this. When she's awake and alert, she is so unhappy, so miserable to be in hospital even though she understands why she has to be.

But more and more now, that's not the complaint. She is just tired. So tired that she hardly eats. Today, she barely spoke. So I sit there and hold her hand. Talk to her. And work really hard for a smile. Which occasionally I am rewarded with. It's amazing how something we take so for granted on a daily basis, like a smile, can come to mean so much when it's rarely seen. I work hard for those smiles and when I am rewarded with one, everything is very nearly all right with the world. At least for a few minutes...

I found myself wondering today if somehow you come to touch the edge of your own mortality as you watch your parent slowly die. I do know that today the thought struck me that someday my children will have to deal with these very same feelings that I have now. And that there's not a damn thing I can do about that. Not for them, then. Not for me, now.

I Believe ...

... in guardian angels.

Really. I do. Well, okay, not really. Or I should say, not that way. It's not like I'm an airy-fairy kind of person.

But when it comes to Mom ... yeah. Most definitely. I do.

Last November I relayed the story of our little adventure when Mom came home from a trip to my brother's. And how when I picked her up at the airport, she fell. Twice. Outside. In the parking lot. At night. When I was by myself with her. In the dark. Dead weight. Yeah, that was fun.

But the amazing part was the man who came from nowhere and picked mom up. We got her across the roadway and she went down again. So he picked her up again and we got her sitting on one of the concrete abutments. He suggested that I get the car and bring it to them. Before I could really contemplate the dilemma of leaving mom with this stranger, no matter how helpful he had been, an older couple appeared literally out of nowhere wanting to help. So I left mom with the three of them and got the car. Guardian angels, all three of them, I tell ya.

I had my latest experience yesterday. In the past few weeks Mom's balance and walking have gotten really bad. I mean really, really bad. And I suddenly realized on Thursday that she needed a wheelchair. If not a wheelchair, most definitely a walker. We had already picked her up once off the floor once when she fell in the middle of the night. And I was seriously afraid of her falling again.

I was discussing this with one of the home care nurses yesterday when she told me that she had a walker which someone had left her and she lends out to people when they need it. Not only could we borrow it but she would bring it to me after work that night. Which was really very, very nice of her. Especially when you consider that she lives about a half an hour's drive from us and after working all day, she went home, got the walker and brought it back to us.

And thank the Lord she did. It's a really nice walker, one of those quite expensive ones with the seat on it. Which, in case anyone was wondering, works quite well as a wheelchair even though it wasn't quite meant to be used that way. But it was an absolute life-saver last night. And this morning. And today.

I am going to have to bite the bullet and put Mom back in the hospital. She fell again this morning (trying to get out of bed) and had me up a lot last night. Because I am the only one in the house who can help with her personal care when home care isn't here. As in I had to leave in the middle of my grocery shopping today to come home and help her. If you get my drift. And it's already killing my back. I knew that eventually Mom would become 'total care' but I never believed it would happen so quickly. But I guess I can only do what I do can do.

Still, my point is ... guardian angels. For my Mom and I. Thank the Lord.

The Circle of Life

We will have lived in this house for 15 years this summer, having moved here when the Blue Jay was a mere 4 months old. And somehow, we have spent most of those 15 years in the same doctors' offices.

There are four doctors in this practice. Have been for the past 15 years. Although some of the names have changed, the number has remained constant. Four doctors each with their own individual office. And strangely enough, the doctor we see now is in the exact same individual office as the very first doctor we started seeing when we first moved here. Although that particular doctor is long gone. Moved to the US, I believe. Make of that what you will.

I never realized until today how many memories you can have tied up in one doctor's office. When the Blue Jay was younger, she would end up in the hospital four times per year for roughly two weeks at a time with clusters of seizures. Yep, exactly four times per year. We actually got it down to quite a system courtesy of her neurologist at the regional children's hospital. Wait for two or three seizures to cluster before taking her to the Emergency Room at the local hospital. Go up with a big packed for both of us, with pyjamas and such and a few books to read (knowing she would always have to be admitted), but leave it in the car until she was. Wouldn't want to look too pushy presumptuous.

One time when the Blue Jay was around 3 or 4, I took her up to Emerg, as per the usual course, with her seizures. The Emerg doctor didn't have a clue about this kid. And refused to listen. I told him that she needed to be admitted. That she would take 40-80 seizures over the course of a week. I told him what drug she needed. He had never heard of it. I insisted that this was the only one that would touch her seizures, that this was all what her neurologist told us to do. He remained skeptical. And it wasn't until the seizures really started to cluster that he tried to go find the med. Knowing what was coming and having forgotten the ever-present bag, I told the nurses I had to run home for a minute but would be right back. Fortunately we are only about a five minute drive from the hospital. I went home, grabbed some stuff and a coffee through the drive through (knowing it would be a long day and night) and went back to the hospital.

The doctor came over and told me to take the Blue Jay home. He had given her the med and she was knocked out cold, which is what it did to her, being a central nervous system depressant. I tried to tell him (again) that she had to be admitted, but he refused. He was not going to admit no kid with epilepsy just because she was having seizures. We argued for a bit but being young(er) and naive(r) then, I finally gave up. I knew the med would only work temporarily and then she would need more. I knew we were also told it wasn't safe to give it to her at home because she needed to be monitored when taking it. I knew this brilliant professional had just given a young child a drug he admittedly knew nothing about and was now determined to send her home. His work here was done. I knew all this. But I wasn't going to get anywhere with this turkey.

So I picked up my stuff and the kid (total and complete dead weight), struggled with her to the car and drove down to our family doctor's office. Carried the Blue Jay in, still unconscious, and explained to the nurse what had happened. Turns out our family doctor was actually at the hospital, assisting with an operation. So they made a bed for the Blue Jay with blankets and a pillow on the floor of our doctor's office while they tried to get ahold of her. Eventually they did. And I was told to take the Blue Jay back up to the hospital.

Gee, why hadn't I thought of that? We should go back to the hospital. Where the pediatrician (who knew the Blue Jay well but who the friendly neighbourhood Emerg doc had refused to call) would meet us. So off we went. Back up to the hospital. Back in through Emerg. Past the pediarician and the jerk Emerg doc who were standing together chatting and laughing. Where I finally got the kid admitted.

Today I was at the doctor's office with Mom. In one of those strange unplanned twists of fate, Mom's current doctor shares a practice with my doctor. Who uses the very same office as that first doctor. So we were sitting in the waiting room today. Waiting, of course. And I looked around the room, at the newborn baby, at the little kids playing with the blocks in the corner ... and over to my mother sitting beside me. Looking very old right at that moment. And very frail. And thought about how strange it was. How far we had come, in a sense. Only to have come back, full circle.

Patience is a Virtue

Or so they say.

At any rate, it seems to be one that I never seem to have quite mastered. The funny thing is that I would have thought I would have by now. We went through so much with the Blue Jay when she was litttle. Uncontrolled seizures. Regression. Early intervention. Speech therapy. Neurologists. Numerous hospital stays. Respite workers. The ketogenic diet. And then one of the funnest of them all, school. Sheesh, I get tired just typing about it now.

But I would have thought, through all that, all that teaching and therapy and what-not, that somewhere in there, I would have been forced to learn to be patient. Nah, not so much.

And now I find, I think I am finally learning it. Or perhaps more aptly, I'm being forced into learning it, kicking and screaming like a spoiled child as I go. Fortunately (for the rest of the world), the majority of the kicking and screaming is going on inside my head. But I am being forced to learn to be more patient now, as I deal with mom's problems, then I ever was before.

Yes, I know how to advocate. Yes, I know how to fight the system to get what I believe somebody deserves. But somehow, somewhere, I seem to have lost my energy to do it. I think I am just burnt out. Well, they always told me it would happen.

But more than being forced to learn to be patient with the system (nah, I'm still not doing so well with that), I am learning how to be more patient with mom. To wait. And wait. And bite my tongue to stop the smart remark that is right there. Not because I'm trying to or want to be mean. But it seems to be the way I've been for a long time. Now, it's learning to take yet another deep breath. And try again.

Frankly, it kind of sucks.

But. Maybe it's just another one of those life experiences you (have to) go through to get wherever it is you are going. Or at least that's what I try to tell myself. When all else fails ... Rationalize. That's my motto. That and God never closes a door without opening a window.

Gee, it's getting a little stuffy in here. I wonder where that window is.

Parenting the Parent

They call us the 'sandwich generation', don't they?

You know, a little bit squashed. Trying to raise our children. While taking care of our aging parents. And work to make a living. Add in everything else that goes along with. Little wonder there are many days when I feel like toast.

Apparently, we've been studied. Poked and prodded. And some have gotten quite creative with their definitions:

Traditional: those sandwiched between aging parents who need care and/or help and their own children.

Club Sandwich: those in their 50s or 60s, sandwiched between aging parents, adult children and grandchildren. OR those in their 30s and 40s, with young children, aging parents and grandparents.(Term coined by Carol Abaya)

Open Faced: anyone else involved in elder care. (Term coined by Carol Abaya)

So. Mom came back from her trip over the weekend. She had spent three weeks out west at my brother's. I picked her up at the airport, having decided that we would get a hotel and spend the night in the city since we both had doctor's appointments there the following day.

Tell me, how much can a person actually 'age' in just three weeks?

I don't know but this person deposited with me by the flight attendant was not the mother I knew. Something's been up with mom, not quite right, for the past year or so. I suppose its longer than that actually. She had always looked very young for her age and been very independent. Then she fell and broke her wrist a few years ago. Shortly after that she ended up in the hospital with other health issues.

And overnight, she changed. In her physical appearance. Her voice. Her physical abilities. Almost out of nowhere. It was scary. It still is. Even though mom is only in her 70s, she had always been very young for her age. Now she seems very old for her age. We had a geriatic assessment done shortly before she went away and they said that it was an early form of dementia. They will do neuropsych testing next week and they should be able to tell us more then.

Anyway, I picked her up at the airport. Even though she gets wheelchair assistance when traveling, we've never had to even consider using a wheelchair to get from the luggage area to the car. I guess maybe I should have this time. She fell. Twice. Outside. In the parking lot. At night. Did I mention that I was by myself with her? And that it was dark?

Yeah, it was a little disconcerting. Especially since there was no way that I was going to be able to pick up that dead weight myself. Thank God for Good Samaritans. I saw a man walking and called for him, asking if he could get us some help. He came over and helped mom up. I guess I should say, picked mom up. We got her across the roadway and she went down again. So he picked her up again and we got her sitting on one of the concrete abuttments. He suggested that I get the car and bring it to them.

But I was a little hesitant to leave mom with this stranger. No matter how helpful he had been. Before I could really contemplate this dilemna, an older couple appeared out of nowhere wanting to help. So I left mom with the three of them and got the car. Eventually we got her strapped in and said our thank yous.

You know those emails that like to circulate about guardian angels and some people being angels on earth? It sure felt that way that night. First the young fellow, then the older couple who appeared literally out of nowhere.

We continued on our way. Got a hotel. Made our appointments the next day and eventually got back home again. But it wasn't just Mom falling ... 'just', as if that wasn't bad enough. She was a lot more confused than 'usual'. And really not herself. I am hoping that it was just the traveling that threw her off so bad. And then being back home again, things will eventually get back to normal ... or what passes for normal around here.

Because if not ... I'm not sure what we will do. I certainly don't see how I can take Mom out alone if she is going to keep falling. Nor do I see how it could be safe for her to stay in her own little house if she stayed so confused. But they say traveling and airports and such can be very aggravating for someone in mom's condition. So I guess we will wait and see what happens.

In the meantime, we soldier on. Or, we will anyway, after a nap. For me, that is. Not her. But I was just wondering ... Are we having fun yet? And if I had a crystal ball, would I really want one?

Something To Look Forward To