I feel really bad for not keeping up "My story" and not being more pro-active on this site.  I sometimes feel terribly disorganized and unable to keep up with things. Tonight I'm working on my parents' expenses from October... Bookkeeping is rarely anyone's favourite task, but it must be done. Especially as money is owed to me, and my December credit card statements are pretty hefty.

Having said that, my father is doing really well. He's at a good weight, his team of caregivers is stable, we've established a more comprehensive routine for him. One of my brothers was in town in October and took a few video clips, something he does whenever he comes (usually once a year). I would like to post a "compilation" here. No promises as to when I'll get that done, but it's something I want to do if only to be able to send the video to his caregivers who have moved away. While we find it hard to accept my father as he is today, the video clips help us see how he was and how he has changed over the years. In other words, today is the best he'll be ... so we have to cherish that.

Be strong, be patient, and know that whatever you do is better than doing nothing at all.

:-)

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I'm again relying on the printed word for this entry, but I feel it's a crucial subject that many don't know how to approach.

See the link:

http://www.canada.com/life/parenting/awkward+talk+Engage+parents+planning/5143659/story.html

Here's the whole article (I hope I'm not infringing on any copyright): 

It's the age-old question: When and how do we have "the talk?"

No, not that one, but the dialogue on the other side of the lifetime spectrum, often just as difficult and delicate - the one about an aging family member's driving abilities, housing transitions, costs of long-term care and even end-of-life instructions.

Most of us, on either side of the discussion, would rather chew on nails than delve into these subjects. Yet as more and more baby boomers step into senior citizen territory and life expectancies continue to increase, such issues loom large.

Even so, these talks don't always have to be harrowing. While each individual, each family, each situation is different, most in the field of geriatric care agree the process is easier the earlier you start - when all parties are fully engaged - and say you should approach loved ones with respect and compassion, appreciating an individual's need to retain independence.

Chris Scott, 52, of Pleasanton, Calif., has been involved in smooth and not-so-smooth transitions with older relatives.

"With my wife's grandmother, we learned the hard way how not to handle aging issues," he said. "We all waited too long to make some of these changes, so everything we did had to be reactive rather than proactive."

It was about 10 years ago when Scott's wife's grandmother, then in her mid-80s, began to slow down, developing health problems. She insisted on staying in her own apartment, but when it got to a point where she was found confused and wandering through the housing complex, she was asked to leave.

"We ended up moving her a lot," Scott said. "It wasn't always a place she wanted to be. And often it was not a place that served her changing needs. The options were limited because of getting into this so late in the game."

In contrast, before his mother's health began to decline, the family started talking with her about her wishes, taking her to visit various facilities over the course of a few years. She now lives in a senior residence in Livermore that offers different levels of care.

"But you can't just walk in off the street and get that," Scott said. "You have to do research, get on waiting lists, plan years ahead. And not everybody can afford just any place they want.

"Talk to your parents," he added. "Work with agencies. It's hard, but it has to be done."

Indeed, the challenge is increasing as baby boomers age. And many will face serious financial challenges with little saved for retirement.

Sandra Cohen and Roger Cormier own an Oakland, Calif.-based consulting firm for seniors in transition. Denial is a big problem, Cormier said. Many who grew up during the Great Depression resist any help other than what family members can provide. And the role reversal - the child now telling the parent what to do - is often offensive.

"But realize that someday, you may be in their shoes, and your kids may be having these very same conversations with you - and how would you like to be approached on these subjects?" Cormier asked. "Basically, what we suggest is - you know your parents, you know what kind of relationship you have and if you're able to discuss these things or not. And if not, you have to come up with a plan B."

Such a plan could involve inviting a close family friend, a pastor, rabbi or sometimes a primary care physician to approach the individual instead. "If a doctor tells them to do something, they usually do it," he said.

"Everyone, regardless of age, should prepare advance directives, a 'living will' or power of attorney for health care," said Elinor Davis, at the Center for Elders' Independence in Oakland. "And one way to bring up the subject of planning for such future care needs is to tell an aging loved one that you are filling out such a form for yourself and you thought it would be a good idea to complete one for them at the same time. That makes it more of a collaborative effort."

Harold Lustig of the California Estate & Elder Planning Center in San Rafael recently wrote a book called "Naked in the Nursing Home," due out in August. It lists specific topics that people should ask their loved ones, questions such as: How much income do you have, and is it enough to maintain your standard of living? What happens to your income if a spouse should pass away? Do you have enough to pay for long-term care? What types of insurance do you have? Are your legal documents current, such as medical and financial powers of attorney? Do you have a will, and is it current? Do you have a health care directive? How old is it?

Once these questions are answered, Lustig says the next step is to meet with an elder law attorney and firm up plans legally.

"The time is now to talk about this. You never know when someone's health will change," Lustig said. "And really, it's the younger person who has the issues with addressing these subjects. They're afraid their parents will think they're just after the money. But I've found the parents don't think that. Seniors are thinking about these things all the time. So it's usually not a surprise to them to address this."

Making financial plans is one thing. But giving up driving is another major hurdle. Driving performance, not age, dictates when it's time to step away from the wheel, experts say. But if a loved one at any stage of life is showing problems on the road, it could be time for "that" conversation.

Virginia, 55, from Sunnyvale, Calif., who asked her last name not be used to prevent any embarrassment to her mother, said her 84-year-old mom would become so upset when any mention was made of not driving, that Virginia avoided the topic - until fate intervened. One evening about five years ago, her mother drove to the store then sideswiped three parked cars on the way back.

"No one was hurt, thank God. She was OK, but shaken up," Virginia said. "Fortunately, though - and I really mean fortunately - her big blue Buick was considered totalled. So she had to give it up."

Virginia admits she should have worked with her mother on this issue sooner. "But can you imagine someone telling you that you can't drive anymore? That you can't have your freedom?" she asked. "I can't imagine that."

Even so, elder care professionals at CEI say it's better to acknowledge the problems than risk an accident. But the advice is to "go easy." Expect to have several conversations about this. Show your concern for maintaining your parent's ability to get around and participate in life activities.

One idea is to practice using alternatives. Work toward zero driving. Have family members and friends provide rides more often. Make it natural by saying, "Let's go shopping together today." Join Mom in trying public transportation. Arrange for home delivery of goods and for automated bank deposits/payments.

If Dad doesn't follow through with promised changes, you need to take further action. See if the doctor will set limits. Remind Dad his behaviour puts others at risk. Impose family restrictions, such as telling him he can no longer drive when the grandkids are in the car.

A lot of senior citizens say they don't want to leave these decisions up to their adult children anyway - to prevent such choices from being a burden on relatives, but also to maintain control.

Maagy Maagy, 83, a retired theatre arts professor who lives in her own apartment in Alameda, Calif., has made very conscious, matter-of-fact decisions about the aging process. Her two children live in other areas and are not directly involved in her life. So she contacted various social service agencies, gets Meals on Wheels, signed up with CEI's Program of All-inclusive Care for the Elderly (PACE), and has also made funeral and burial arrangements.

"Getting old is something you don't want to admit," she said. "Being independent all your life, it's really hard to give that up. But I came to the conclusion that everybody has to die. It's not something said to sound morbid. It just happens. You have to deal with it and take responsibility yourself."

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I will write a separate update soon, but in the meantime, I'm putting a link to a newspaper article that writes about a case of elder abuse that was first broadcast on a Montreal TV station (French language).

http://www.canada.com/entertainment/Fall+with+elder+abuse+alleged/5099679/story.html

This is an issue we all worry about. Just because it exists, though, doesn't mean we can't do anything about it. Like many other societal issues (rape, spousal abuse, bullying, etc.), if we don't talk about it openly, the problem will continue, and victims will continue to suffer.

My action was writing a letter to the editor of our local newspaper. It was published, but edited, either for length or for content (still not sure which).

Here it is in full:

" Seeing such abuse is exactly what so many people fear when the subject is raised about moving a family member to a long-term care facility. Why? Partly because they no longer have any control over their relative's care and can't see what's happening with him or her on a regular basis.

With two parents in care facilities, one private, one public, I can say that there are good employees and unsuitable employees in either system. It is the unsuitable employees who need to be weeded out.  Friends and family who witness abusive behaviour need to document the events, and file a formal complaint to management. If management doesn't know a problem exists, it cannot fix it. Many family members and residents, however, fear retaliation, so they say nothing. This is the worst thing to do and allows the abusive behaviour to persist. But, even if a family member raises the issue and their relative is no longer abused, other residents may remain victims. Unfortunately, elder abuse is not discussed openly among residents' relatives, and no one wants to be the only one to rock the boat.

Bottom line: any type of abuse -- be it physical, verbal or psychological -- should be reported."

I received a few reactions from friends, who happened to read the "Letters to the Editors" page. I also received a phone call from a radio station producer, who is considering doing a panel discussion on elder abuse; we had quite an interesting discussion. Not sure what will come of it, but obviously there is growing concern about situations such as portrayed in this particular case.

More links:

http://www.canoe.com/infos/societe/archives/2011/07/20110714-070800.html

http://montreal.ctv.ca/servlet/an/local/CTVNews/20110713/mtl_menard_110713/20110713/?hub=MontrealHome

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Much and not much has happened in the last two months. 

On the much side, my father was moved out of the locked unit on February 14 to make room for someone who needed the extra supervision. Apparently he was the best candidate of the twelve residents on the unit. I knew the day would come eventually, but not so soon. I had a day to digest the request, and another day to organize the move. A move is a move: you gotta pack up and undecorate and then unpack and redecorate. His new room was on the 4th floor (vs. 2nd floor) with a view of Mount Royal. Being on another floor meant getting to know a team of nursing and attendant staff. For my dad's sitters and me, this was the main drawback. Still, we made the best of it. But I also asked the residence to notify me should a room become available on the 'regular side' of the 2nd floor.

A couple of days later, my mother had another bad case of diarrhea and rectal bleeding. This time, I opted to take her to the ER. Long story short: she was in hospital for six nights. Which meant I spent seven days with her (you really cannot leave a senior alone in hospital these days!)

In the meantime, my father's private sitters were facing a few challenges of their own with regard to the 4th floor staff. So a visit was due to discuss the issues with the nurses.

Fortunately, no work came in during those two weeks, so while I would normally worry about that, this time I was relieved I wasn't placed in a position of either refusing a job or having to work in the evening (into the night...)

On March 31, an auspicious date for my father, I was contacted to say a room had become available on the 2nd floor. Regretfully it was the result of a lovely lady passing away.  It didn't take long to decide and on the morning of April 1, with my brother in town, we went to move his belongings to the new room. We took my mother along. Don't know if she was in a particular mood that day, but she cried buckets seeing my dad the way he was (sleeping, no teeth). Then a bit later, after he woke up, she was crying again because she couldn't understand what he wanted, what he was trying to say, etc. Very upsetting for everyone! The next morning, I found her all teary again. Plus, she hadn't slept well either.

On the not much side, my father is pretty much the same but very slowly losing motor abilities. I hope with the nice weather coming that his energy will return. But my expectations, at this stage, are not very high. The best we can do is to ensure his days are peaceful, pleasant and pleasurable. The rest is a waiting game.

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Hi all,

I wrote my first blog in August with the intention of describing how "almost everything about my life has changed in the last five years."  But I got stuck on the work theme, which actually wasn't all that evident after I re-read my entries.

Plus, I wasn't able to keep to my self-imposed schedule for writing my blog: an ambitious bi-monthly cycle is what I had in mind. That obviously didn't work out.

Having said that, I will say that everything that changed in my life was/is: work, home, eating, responsibilities, free time, friends, how I perceive and deal with the elderly and the sick, and me.

Work now is not only a means to earn money but also a source of personal satisfaction; home is where I sleep, work and eat; eating is something I do out of necessity; responsibilities are now sometimes more than I feel I can handle because they are 90% parental; free time is precious; friends are those who can still bear to listen to me talk about my parents, who've stuck by me for better and for worse over the last five years, and who can empathize with what I'm going through; the elderly are to be cherished and listened to - we can learn so much from them; the sick are to be cared for with love, empathy and patience.

I am not the same person I was five years ago. Then, I was single, independent, free to do what I wanted when I wanted. Today, I am responsible for my mother and my father (legally and emotionally), they depend on me, and my thoughts and actions revolve around them. Their needs come first, although there are days when I want to be selfish and think only of me. Those are the days when I will most likely get a phone call saying my dad fell or my mum threw up three times. So thoughts of me fly out the window and I go back into caregiver mode.

My salvation are sleep and books. They are my way to retreat from the realities of this world. I also think it's how I've maintained my sanity.

Today, my father sits more than he walks, naps often, sometimes feeds himself, sometimes gets fed by the sitter, doesn't like to wear his denture, has only six teeth left (and I'm doing everything I can to ensure those teeth stay in!), has a private sitter eight hours every day to look after his needs, and most times doesn't react when a family member comes to visit: that could be my mother, me or my oldest brother. My other brother and sister visit once, maybe twice a year. They spend lots of time with my dad when then come, but are not sure either whether he recognizes them. My sister figures he might smile at her only because he thinks she's me, since we look so much alike (our voices, especially, are nearly identical).

My mum is the cat with nine lives. I think she has about five left. Whenever she falls, literally or figuratively, she will get up again. She is optimistic, if she thinks she's failing at something, she will try and try again, she is brave, she is a fighter. She's my hero.

Today, my life is theirs. I know that they devoted their lives to us from the time we were born. It's "pay-it-back" time now, as far as I'm concerned. It's not always easy -- I get frustrated, depressed, angry, fed up, wish to escape to a deserted island for six months or more. But as long as they are living and breathing, I will do what I can to make their lives pleasant, pain-free, and worth living.

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[OK, so that's a bit of a dramatic title. Still, when I think about it, almost everything about my life has changed in the last five years. 1. Work:]

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... to continue my story. I'm just swamped with work and working six days a week until late evening. I will write again soon.

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[OK, so that's a bit of a dramatic title. Still, when I think about it, almost everything about my life has changed in the last five years. 

1. Work:] 

PART 2:

March 2008 - as mentioned previously, my mother was in hospital recovering from a hip fracture operation.  Until now, my father had been OK to take public transportation, and he probably knew the way to the hospital with his eyes closed, so often did he do the trip the previous year. This time, as soon as I felt it would be OK for him to visit his wife, we agreed that he would come on his own and meet me at the hospital. We spoke on the phone after his breakfast and he said he would be leaving shortly to take the bus. I waited and waited - and started worrying when he didn't show up. I called the residence's reception to see if they had seen him leave the residence and was told that, yes, he had left at such and such a time. I called a half-hour later, and again a half-hour later; this time, I'm told he came back -- but escorted by the transit police! From what the receptionist said she saw from her desk, he was having a nice chat with the officers, but they didn't come in to explain why they had driven him home.  I never did find out what had happened, except that he still had his bus ticket. From someone who knew the public transit system better than I did, and figured out routes to get from point A to point B, he now was unable to even get on a bus or to the metro station? Scary! Still, it was a relief knowing he was back home safe and sound.

Which now meant that I would have to escort him to/from the hospital so my parents could see each other. While I tried to bring my dad to visit her in hospital as often as was feasible, it gradually became clear that he was stressing her out during mealtimes. He would stand over her (already a threatening position to a sitting person), and make sure she ate her meal. He was concerned she wasn't eating enough, and wouldn't regain her strength to walk and be independent again. With his actions, he was actually making her lose her appetite! Once I became aware of this, I arranged his visits in such a way that he would arrive after lunch and leave before supper.

I spent whatever few spare hours I had with my father, so he would not feel too neglected. I also had to look after his affairs, as he no longer understood his credit card statements (I had a nice mess to clean up with Amex; once that was done, I cancelled the card), nor his bank accounts. For someone who had always had a mathematician's grasp for numbers, it must have been heart-rending to admit this. He was also putting cheese in the freezer, butter in the cupboard, sugar in the fridge, packing and repacking boxes (probably because he saw others moving in or out, and felt his turn was coming soon...). 

I think this was the worst time for him: aware of losing some cognitive abilities, trying to camouflage these losses, and doing things he could not explain.

In the meantime, the physiotherapist (PT) was convinced my mother -- 81 years old, with a history of osteoporosis, lymphoma, Parkinson's dementia - wouldn't walk again. 

Honestly, I was ready to accept that prognosis. I wasn't even sure she would be able to go back to the residence, given her physical and mental condition. Still, if I knew anything about my mother, it's that she does things in her own time and that she's headstrong. I now believe that her body was being healed inwardly by her mind, and once her mind declared that her body was ready, she began to sit up, then to stand up, then to take a few tottering steps. Finally, the PT agreed to work with her to strengthen her muscles. I later told the PT that my mother "marches" to her own schedule, and that there's no point in trying to rush it. Nevertheless, I knew it would take months of pain, sweat and tears on my mother's part to walk again - but I was convinced she would succeed.

(Spoiler: this same PT, who last saw my mother confined to a wheelchair in March 2008, was astonished to see her walking solidly with a walker in November 2009. We stopped to chat and she then confessed to me that, at the time, she had thought I was nuts trying to "make" my mother walk).

End of March: my mother was discharged and fitted for a special wheelchair (even the wheelchair technicians were convinced my mother wouldn't walk again!). I bring her home, to her room. She was weak and sometimes confused. I decided I would spend the next four nights sleeping in her room to make sure she doesn't fall out of bed, or tries to get up on her own to go to the bathroom, since she's still not able to stand solidly on her feet. My father was in a separate room down the hall. The first few days were OK, with everyone adjusting to my mother's situation and my instructions. I monitored both parents to ensure things ran smoothly.

In the meantime, my sister, (who lives in Switzerland) had made arrangements for a leave-of-absence from work in order to spend three months here to help me out. Thank goodness she did because I don't know if I would have survived the next couple of months. She also wanted to give me an opportunity to be free enough to work full time on/at my business, something that had not been possible until now.

April: to ensure my mother's safety during night, I hired a couple of 'night sitters' who took turns watching over her. I was also referred to a private physiotherapist, who has the most wonderful approach with elderly people, and made the exercise sessions something my mother actually looked forward to. And my father? More and more, he would question why he had a double bed but was sleeping alone in it. More and more, a tussle would occur after supper, in which my wheelchair-bound mother was in the middle, my dad on one side trying to grab the handles, and the wheelchair, away from an attendant on the other side.  A real tug of war! Again I had to intercede to come up with a system whereby my father would be distracted so my mother could be brought to her room safely and made ready for bed. But my father, a war veteran and concentration camp survivor, had learned to fight for what was his, and his wife was his!!!  She could be with him most of the day, or if not, he would know where to find her. As long as he felt her presence, he was OK. 

But evenings... she would "disappear" and he would search for her. Checking the rooms one by one until he found hers (he had her room number on a piece of paper, but often had to ask what 219A meant). The night sitters started to become a bit nervous, until I told them it was OK to lock the door. But they only started at 11 p.m., so until then, anything could happen. For instance, one night, my dad made a makeshift bed beside my  mother's bed. For her safety (and the night sitter), we moved her to his bed and left him sleeping on the floor. One evening, he "kidnapped" her and locked her in his room. One night, she was found in his bed... and we had to "kidnap" her back out to her bed. My sister and I were called in each time to negotiate a peaceful outcome to these incidents, which increased as time went on. Sad to say, on most of those occasions, the evening nurse totally mishandled the situations. In his frustration, my father would become aggressive... and one night, violent. 

May: A neighbour had often invited me to his country cottage, but I had never been able to accept the invitation. With my sister in town, I was finally able to go for a weekend. Ah... bliss - I could eat, drink, relax and sleep in peace for two nights. Little was I to know that a scant half-hour after my departure, my sister would get a call saying that my father was threatening the evening nurse with the metal footrest from my mother's wheelchair (which meant he'd taken her to his room again).

I heard the whole story when I came home Sunday afternoon. My brother and sister had agreed that my dad be brought to hospital for observation on the Friday night. My sister was now the one who had to run between the hospital to monitor my dad and talk to the doctors, and keep an eye on my mother, etc. I imagine she understood more fully what I had been going through for the past couple of months.

Because my sister was the current "go-to" person for our parents at the residence, she was the one who was told by the executive director that they would not accept my father back and she would have to find another place for him (not the exact words, but nearly - my sister was rather shocked at the unsympathetic delivery of such news). 

In the meantime, given that my mother's prognosis was still uncertain, we began to look into full-care nursing homes for her, while at the same time, realizing that my father would probably soon be declared incompetent, we started the paperwork to have the Mandate In Case of Incapacity homologated. This would make me my father's legal guardian.

By the middle of June, my sister was preparing for her return home. It was with a very heavy heart that I saw her go, but we had found a wonderful companion to stay with my mother during the day, so I could continue with my work.

Over the next several months, my mother slowly improved and made progress in her walking. At the same time, my father gradually adjusted to living on the long-term care unit at the hospital.

TO BE CONTINUED

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OK, so that's a bit of a dramatic title. Still, when I think about it, almost everything about my life has changed in the last five years.

1. Work: 

I now work from home as a freelance translator. Granted, I didn't need my parents to be struck with cognitive illnesses to take this step, but that's what happened. I had a full-time, permanent job when my mother was hospitalized with what we later learned was the onset of Parkinson's dementia. I had an understanding boss who let me take time off (deducted from my vacation time) to oversee my parents' move to a senior residence, the sale of their house with the help of my siblings (an experience that I relive with some bitter and profound regrets), and organize the first Christmas celebration ever outside our family home. This was in 2005. 

In early 2006, my father was diagnosed with Alzheimer's. He had had a terribly difficult time adjusting to the residence, having had a near-obsessive attachment to the house, and consequently likely suffered from depression his first six months there. My mother, on the other hand, was like a person reborn, taking part in the activities, enjoying the social contact with other residents, the nearby park, etc.

In June of 2007, my mother was in hospital with a diagnosis of non-Hodgkins' lymphoma. Within two weeks of her return, she was admitted to Emergency with a perforated bowel. I had already given my resignation, fully intending to start up my own business as a self-employed, home-based translator, but decided instead to look after my mother on her return to the residence (beg. Sept.), in the hope of preventing yet a third trip to the hospital -- in my mind it was "all bad things come in threes". Maybe my subconscious knew that my father was not able to take care of her the way she needed to be. She'd lost weight, her hair was thin and wispy, and she would have continued to do the laundry, the shopping, and my father's bidding, as she was used to. By the fall, he was having difficulty taking his medication as prescribed (I used to find extra pills, which he said were "extras"); and sometimes couldn't understand why my mother "wasn't getting better" (i.e. do all the things she used to do when she was younger and more able). 

I gingerly started taking on work towards the end of October.

Beginning 2008, I'm told by the residence's director that my mother needed extra care, and a move to the 2nd floor (assisted living) was strongly recommended. Until a room become available, however, I hired attendants to do night duty, because my mother had begun to wander the hallways (on occasion, naked!). They did double-duty with my dad there too. Mid-January, my father and I had a huge argument, I fell to pieces, not understanding at the time it was not him who was talking, but the person with Alzheimer's. I called my brother in Ottawa (the sibling living nearest to me) - only got the answering machine -, so I phoned my sister in Switzerland, who answered and by then I'm frantic and sobbing and saying "I can't take this anymore!". She managed to reach my brother and, bless his wife, who tells him to get to Montreal pronto! He arrived some two hours later, and after I recounted what happened, called 'our' hospital and talked to a doctor who told him he's to bring my father in right away. My father went with my brother. It's a Sunday. I wonder afterwards how he got my father to go to a hospital on a Sunday. When I asked him, later, he said that he'd explained to our father that the doctor had called to say his (bogus) appointment had been brought forward due to XYZ reason, and my father accepted the explanation (goes to show how far the illness had progressed)!

My father stayed "under observation" for three weeks. They would've discharged him sooner, only we were in the process of moving my mother from their 3rd floor apartment to her 2nd floor room, and we didn't want him to stay alone in the apartment. Thankfully the head geriatrician accepted to keep my dad another week or so - in the meantime, miraculously, another room had become available (unfortunately, but as it so often happens, because the tenant had passed away). So we ended up clearing out the 3rd floor apartment and setting up a separate room for my father - no other option was considered workable.

So, my father came back from hospital on February 9, 2008, and found himself in an unfamiliar room on the 2nd floor, separate from his wife. Hard to say how he accepted this in his mind, since, two days later, my mother broke the neck of her left femur. She was operated on three days later. I spent most of the next six weeks in hospital keeping an eye on her, and in between kept another eye on my dad, bringing him to visit my mother on days when the timing was good. March was one of the worst winter months in years. I doubt I worked much during that time, since I remember catching the bus to get to the hospital at around 7:30 a.m. and getting home between 8 and 9 p.m.

TO BE CONTINUED

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