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23. Palliative Care at Home Part 11

2010-12-03T03:13:00Z

By Susan Ellis of KeyLifeJourneys 　

Suddenly the drama is playing out its final scene. Suddenly you realize it is too late to intervene. All that could, should have been done….it is too late to ponder what if. Everything is beyond your control. When will the end come? Should one stay? Does it now matter? Your energy is there, your thoughts and prayers are there. You’ve left the gentle music playing. The music associated with you. So I went home and fell into an exhausted sleep..

The phone call came at 7.15am on Saturday. The bird has flown. The next day of your life has begun.

I was at Tammy’s apartment less than 30 minutes later. At rest - her limbs still warm and flaccid. I’ve seen death before. In 1999 my partner Sue was taken off life supports. I watched her die. You become detached. You are detached. That is what death in the presence of life is. A threshold you cannot cross until it is your time to do so. That is what is so powerful about these moments. You are aware that a chasm has opened and each of you rests on opposite sides.

At 8am the next PSW came on duty and she with the one who has shared Tammy’s last hours of life work together to lay out her body. The window was opened to keep the room cool. The four women who had been entrusted with Tammy’s care had shown her great respect in life. In death they did not desert her. This provided great support to me.

I made the call to the Palliative Care Centre. A doctor with the death certificate would be with us in two hours. Step one was easy. With certificate in hand I phoned the funeral home. Within 45minutes men in black were there to take Tammy’s body away. How relieved I was that the preceding December three of us had finalized our funeral plans and had pre-paid the services. No decisions to be made now, everything had been set in motion. On Sunday morning I would go to the funeral home to sign papers and get a pile of death certificates. There was to be no funeral. There would be a cremation with scattering later. The celebration of life party would happen later also.

I made some phone calls so that by word of mouth notice of Tammy’s death would reach those who knew her. That night I would send out the email to all those on the mailing list.

In the spring Tammy and I had booked a timeshare condo in Thornbury Ontario for our annual fall colours sojourn. It was to start on the Sunday. I had known for a long time that Tammy would not be making that journey but now it looked like I would get some time away to rest. All I had to do was get the equipment out of the apartment before I left. It was done. There was one final errand - to return of the rented wheelchair. The store closed at 5pm. If I got it there in time all would be in order and I would leave on the trip to Thornbury the next day.

At about 4.20pm on the way to the store I was involved in a traffic accident. My car would have to be towed to the reporting centre and I would have to spend my evening there in the cold impersonal environment instead of being in the warm company of friends. In that moment of the accident I realized that I was succumbing to the stress of grief. Of course I never should have been driving. My mind was not focused. It was a miracle no one was hurt. Suddenly my role of providing palliative care was gone. I was alone watching my car being attached to a tow truck and I knew my tears would have to wait.

In my DVD Aspects of Hope I talk about the grieving process as it hit following my first caregiver role. How would I handle it this time? I would go to Thornbury on Monday. Tammy’s unsold car sat in my driveway. Part of her was going with me.

"To what shall I compare this life of ours? Even before I can say it is like a flash of lightening or a dewdrop, it is no more." Sengai

22. Palliative Care at Home Part 10

2010-10-03T23:48:00Z

By Susan Ellis of KeyLifeJourneys

Friday 1^st October was a fresh crisp sunny windy fall day. One made for scrunching leaves under foot; one made for smelling wood smoke from a cottage chimney. It was a day for filling the lungs with fresh air and expressing gratitude for life and beauty and wonder. A day created with a heightened sense of awareness of the fragility of life, the imminence of death. I had watched the dawn break from Tammy’s 5^th floor living room window.

The passage of time to this point seemed to have been so slow and now it was racing to the end. Suddenly the realization that the time for discussions and questions asked was over. The Tammy I knew was no longer here. Indeed that morning when the day shift Personal Support Worker (PSW) arrived and we together changed the stained sheets for clean and Tammy moaned as we moved her limp body, I had difficulty calling her Tammy. She had long gone. The tired helpless shell that was her earthly body remained, the motor stalled. I massaged a shoulder, I straightened her hair. I talked. I’d been told the last sense to fail was hearing. I played gentle music on the CD player.

I stroked and tickled the cat that sensed her world was changing. Indeed there was one more helping in the can in the fridge so I fed Scottie in the morning.

Until you look death in the face you can deny its presence. But when you look at the body of the friend who has been some part of your life for the past 27 years and know there will be no more two-way communication, denial serves no purpose. Tammy said she had quality of life during her dying, she evaluated many days has having been good. Now it was time for a good death.

There are some who will read this and feel I am betraying privacy. How dare I share what seem intimate moments of a life ending with the whole world. Many have used the word courageous when referring to Tammy’s dying time. Many have been inspired by her openness and candour. Indeed she has made for me an MP3 about what the dying person needs from those around. Tammy was about sharing her experience. This is not about manipulated reality TV. This story is painfully authentic and Tammy wanted nothing hidden. When people told her she inspired them it gave her living/dying a greater dimension. This was her death and she could live it how she chose. She had spent most of her life afraid of dying. Through most of the time since her cancer diagnosis that fear had gone. When it came to the palliative phase she took control of how it would be until she had no choice but to surrender. Yes, she feared the letting go, a time she would have no choice but to trust. That time had come.

I took Jane home that morning and returned to my own. I walked around my garden. I renewed myself and returned to Tammy’s apartment. The PSW swabbed out Tammy’s mouth to freshen it. The only movement was from the sucking reflex. The RN arrived to check things out and marvelled at the reality that the reflex is the first to appear and the last to go. She filled some more syringes for me, encouraging me to use them sooner than later so that there would be no breakthrough pain.

Shortly after 4pm the vet arrived and I lifted Scottie off the bed where she lay sleeping. I told Tammy what we were to do. While Scottie was in my arms in the living room the vet injected her in the abdomen. She was a little restless as the drug took effect but happily ate some treats from the vet’s hand. After about ten minutes she fell asleep on my lap. The vet carried her to the bedroom and placed Tammy’s arms around her. I told Tammy that Scottie’s heart was still beating but would be slowing down. The vet and I sat in the bedroom as two lives, which had been so intertwined, wound down. The vet touched Scottie’s chest one more time with the stethoscope. There was no heartbeat. I reminded Tammy that she too could let her heart stop beating now if she chose.

That ritual had been incredibly moving for me. I have been in vet’s offices before now where the euthanization is over in a flash. There was a grace about this one; an honouring of lives. No surprise heart stoppage, just the slow ending of a life well loved. I knew it was preparing me for what would happen soon.

Tammy had a collection of elephants and a collection of soft toy animals. She had been giving them away to all who visited. But before she started I asked if there was one she wanted to keep for her to hold at the end after Scottie had gone. Tammy had immediately selected an ultra soft small cat our friend Mary had brought to her in the hospital following her Whipple Procedure. Its time had come.

Mary joined me a Tammy’s that evening and said her goodbyes. The night shift PSW had not worked since before Tammy slipped into unconsciousness. There was a bond between them and I knew Tammy would have no sense of being alone with her there. I promised to return at midnight to give Tammy another needle and I left.

On my return I saw that there was no movement, no responses. Tammy had had no supplemental oxygen since Thursday afternoon. There was no coughing, no wheezing. Her heart was working so hard to keep the body alive. Most of the other organs had called it quits. I was exhausted. Tammy was in good motherly hands. I gently reminded her that her well-fulfilled life was now complete. I went out into the night.

21. Palliative Care at Home Part 9

2010-10-01T16:54:00Z

By Susan Ellis of KeyLifeJourneys

It was Thursday. The weekend was coming. I needed everything that a doctor could give me to be at my disposal. Tammy had been talking about not feeling good but she could not describe it as pain. Over the phone I shared with him the problem with the restless nights. The doctor agreed that subcutaneous medication was called for. He would prescribe a major tranquillizer – the sort used to treat schizophrenia and also an opiate derivative for pain. The nurse would insert a needle under the skin and through a port I would be able to inject measured doses. Everything needed would arrive that afternoon.

Our very capable 8am-1pm shift Personal Support Worker (PSW) was available and was willing to extend her shifts to 5pm on the Thursday and Friday.

The RN came on her regular visit in the morning, assessed the situation and ultimately inserted a urinary catheter. Tammy was in and out of consciousness at this time and we knew she would be staying in bed from now on. At one point while she was sitting with her feet dangling over the bed I suggested that I phone the vet and set the appointment for the next day, Friday, to have Scottie put to sleep. Tammy nodded. I made the phone call.

Throughout this whole journey two issues were disturbing Tammy. Making sure I was okay after she was gone – since she had had such a great need to look after me. The second was ensuring the cat did not suffer. Part of her had wanted Scottie there with her to the end and that is what we had ultimately agreed on. I had promised to have Scottie euthenized straight away Tammy’s passing. But although Tammy was no longer able to give Scottie any attention I knew the cat was still on Tammy’s mind. Scottie slept peacefully on Tammy’s bed. The other motivating thought in my mind was that the weekend was coming. I felt sure Tammy would die over the weekend and what if the cat was left alone before the vet was able to come? The appointment was made for 4pm Friday.

Later the nurse came and Tammy did not register when the needle went in. The nurse loaded syringes and taught me how to proceed. I was reticent about the tranquillizer. My career had been in mental health, I had seen the adverse effects these medications have on people. How would Tammy react? I made the decision that the opiate would be used alone. My friend Jane was with me as I did that evening shift.

Our Thursday night PSW generally was with Tammy just the one night a week. She had not seen Tammy for a week. She was shocked by the deterioration she saw. It is at times like this that you see the caring and attachment that workers can have for their clients. Jane and I decided to spend the night. The three of us working together to ensure that in Tammy’s semi conscious and unconscious awareness that she was not alone, that she was touched and held and loved.

20. Palliative Care at Home Part 8

2010-09-30T16:33:00Z

By Susan Ellis of KeyLifeJourneys

There comes a time when one must witness the body really crumbling; the decay wrought by cancer shows its destructive face with a vengeance. The fears of all touched by it lead to different reactions. For Tammy it showed itself as sleep filled days and restless nights. It showed itself as her needing to go independently to the washroom to pee – and she did. Certainly now she was excreting more urine than the body was taking in as liquid. Food was no longer of interest yet the illeostomy bag was filling with a black substance. The cough would come and go. On two days she coughed or vomited while coughing some vile coloured substances. Sometimes her skin was very jaundiced other times not. How does the on looker face all this? It is not pretty. Slow death like this seems cruel. When Tammy has been so courageous why should she suffer now?

We could only live in the now; not what would be, but what was needed now. Tammy was impatient and critical of the paid staff and me. She wanted action now. Indeed she demanded action now. This is the face of one sinking out of control, lashing out at those who will not walk away. Similarly my sense of helplessness was stressful to me so I looked for the things I had control over. I seemed to be forever taking loads of laundry home to wash.

Tammy’s legs could no longer bear her and she agreed to let me move her about with the wheelchair. I phoned the on call palliative care doctor about the cough medicine. What had been ordered was a cough suppressant, yet Tammy was trying to cough, and after much stress, was coughing up phlegm. Did she not need and expectorant to help her? The doctor suggested that both could be used. The over the counter expectorant could be used during the day and the prescription suppressant at night. When the Personal Support Worker arrived to do the night shift I suggested to Tammy that she should try a diaper for use over night as getting into the bathroom from the wheelchair was very difficult.

That night I was called over to Tammy’s apartment twice to try to settle her. She was concerned because she was inside a bag and couldn’t get out. I explained the need for the diaper and she was willing to take a minor tranquillizer under her tongue but it had no effect. On my next visit she agreed to take a sleeping pill, which brought no rest.

19. Palliative Care at Home Part 7

2010-09-29T13:56:00Z

By Susan Ellis of KeyLifeJourneys

Rule #1 - never make promises to a person who is dying, that you cannot or don't intend to keep.

It is 6.30am as I write the first draft of this post at a table in a coffee shop. I have a heavy bacon/egg/cheese muffin before me and a black coffee. Through the window I see black silhouetted buildings back lit by an increasingly paling blue pre-dawn sky. The gliding snakes of headlights from drive-through traffic are endless.

Night is endless to the person who is dying and cannot sleep. Tammy is afraid to take sleeping pills and tranquilizers for fear of losing control. In her confusion she still wants to think straight. There is no pain to recommend the balm of opiates. The night staff has tried all techniques to induce calm and sleep.

Shortly after 5am my phone rings. "You promised me you would come if I ever needed you." Tammy says. I have done so. I shake off sleep.

Once at her apartment I finally persuade her to sit in her reclining chair and pop a tranquilizer under her tongue. I sit with her as she relaxes, fully aware that I am the one she counts on to make everything right. This isn't my ego talking. It is not a responsibility that I cherish. I am well supported and there are others who would share the role. But everyone knows I am her rock. In her position I would want someone like me around. One needs just one person, one constant figure in a sea of changing faces and insecurity. One needs a safe harbor before one cuts oneself adrift.

We revisit the question discussed before which is still causing disquiet in her mind. Tammy can no longer decide when the right time to euthanize the cat is. I have promised her I will have it done after she passes. But Tammy is still in conflict. She remembers her commitment to her cat to allow Scottie to die in her arms. The cat is not adoptable. The vet has agreed. But Tammy still wonders does she have the right to let the cat die and she live on? Only animal lovers will understand this dilemma. I am so grateful that all in her circle do feel this pain.

I am in conflict. Would putting the cat down now traumatize Tammy's last days or would it help her let go? Probably both. I think most people who are dying and who have time to think, have unfinished business preventing them from letting go. Many times they hang on because they know their loved ones are not ready for them to go. Tammy has reassured herself that people will "look after" me when she is gone. Now I have tried to reassure her that I will not let her down and I will follow her wishes regarding the cat. "I think Scottie would want to stay with you till you go" is my last statement on the matter. Tammy grunts and falls asleep.

Some distant clouds are silver tipped as the sun makes her appearance. A jet streams white across the sky. A plane is going somewhere else. I sit with the end of my coffee ready to face a new day here.

18. Palliative Care at Home Part 6

2010-09-28T03:56:00Z

By Susan Ellis of KeyLifeJourneys

There is a confused reality in the zone between sleep and waking. Life must be slowed down to a snails pace if it is to be understood. There is a pause before answering a question. There is a wait before action follows the decision to act. Tammy falls asleep in mid sentence and then five minutes later continues where she left off. Panic if life becomes too complicated - a shift change- new faces there when she wakes up. But with gentle reality orientation and answering her questions, she settles down to calm.

Hand /eye co-ordination is failing and she can no longer successfully initiate a phone call. She makes the decision "You deal with the phone from now on."

There are peaceful moments. "Is it nearly time to put the cat down?" She asks. Yes is my reply. "Is it okay if I live a few days longer than the cat?" Again the answer is yes. "I need to think about that" and it is a time for silence.

What are the thoughts that meander through the mind of a person who is dying? Are they causing anxiety: being distorted into mistruths? Are they best untouched by another, never to be revealed? You wait. Hoping you can live with the answer.

17. Palliative Care at Home Part 5

2010-09-26T15:52:00Z

By Susan Ellis of KeyLifeJourneys

So Tammy probably still has pneumonia but the antibiotics are finished. Her cough is relieved by the cough medicine and inhaling Vicks vapors. I do a little clapping on her back; cupping my palms onto the ribs which now lie just under the skin. She is not eating enough food to nourish the heart muscle. She has chosen to have no more visitors. She does not have to "perform" any longer. She will see just the regulars who do the shifts.

Yet Tammy remains in control, now perhaps desperately in control. Anger wells up when her instructions are not followed. This anger scares her. The last decision is yet to be made. To let go: to surrender.

16. Palliative Care at Home Part 4

2010-09-24T16:23:00Z

By Susan Ellis of KeyLifeJourneys

When she learned that she was dying, Tammy wanted to come home to her cat. Scottie is a pretty 11 year old calico who was traumatized in her youth. With Tammy's love and patience she has become a one person cat. As soon as a second person entered Tammy's apartment the cat disappeared. Very few people had ever seen the cat. With Tammy's hospitalizations Scottie remained a one person cat - the feeder.

Now Tammy is never alone. How would the cat react? Well Scottie has adjusted. It's all about energy.

On entering Tammy's apartment people are asked to leave their egos at the door; no emotional baggage, no negative energy can cross the threshold. Tammy asks people to adjust to her energy and go with her flow. She does not hesitate to tell you that you are speaking too loud, moving too fast or are too excited. When all is in harmony, the cat appears. Now, if Scottie has been lying on the bed and a visitor approaches, she may not even look up.

One afternoon a friend brought an amethyst crystal for healing energy and another gave Tammy a bracelet of magnetic stones to wear. Tammy is surrounded by healing energy. Healing isn't about curing. Healing is about being whole. It is a reminder that the spirit is not wounded; only the body is dying.

The intellect can be negative in its thinking or positive; a choice. The feelings follow along. Tammy says "I'm having a good day aren't I?" I could say - what do you mean, you've got pneumonia, your recent bout of jaundice signals decay, you don't eat or drink enough to keep you alive and you think you are having a good day? But I look at what really matters. Tammy is eating some strawberry jello that I got from the restaurant where we often used to have Sunday brunch together. We'll check the blood sugar later. Tammy has her cat sitting beside her and a CD of gentle North American Indian music is playing. At this moment she is calm, pain free and safe. Yes Tammy you are having a good day.

15. Palliative care at Home Part 3

2010-09-24T01:43:00Z

By Susan Ellis of KeyLifeJourneys

There is a marked change in functioning when one has pneumonia. Coughing disturbs one's rest but confusion enters the picture. Tammy shared that she was having difficulty distinguishing between sleep and being awake, that during the transition there were major changes in perception. Tammy often felt that there were more people present than there were. Often she would say something out of context and when questioned say "oh I was just thinking out loud."

With the first antibiotic there was a calm and frequent falling asleep. There are six pills to be taken. She has had 4 so far. We still wait for the cough to cease. At least the lungs do not appear very congested. I rubbed some Vicks on her chest this afternoon and set a humidifier up in her bedroom. It is all about comfort now.

One great comfort is the oxygen to be used when ever she wants it. When it arrived there was a machine which drew oxygen out of the air to be inhaled. But the company also provided us with three different sized tanks of oxygen for use if she needed to walk with it or if we had a power failure. Also there came a gift bag. It was a very caring gift bag. The bag contained a book which I leave on the coffee table. It is called "A Caregiver's Guide. A handbook about end-of-life-care." It is by Karen MacMillan, Jacquie Peden, Jane Hopkinson and Jennie Hyde. Published by The Military and Hospitaller Order of St. Lazarus of Jerusalem and the Canadian Hospice Palliative Care Association.

It is a very comprehensive guide and all who share this space thumb through it gaining some new insight. Other items in the gift bag were a lap rug, night light, toothbrush/paste, a notebook for journaling, a packet of paper tissues and a CD of relaxing music. Tammy dozed in her recliner chair following the first dose of antibiotics with the music playing. It calmed me down too. Later we looked through her collection of CDs to find sounds of nature and Native American rhythms. These are going to useful in the days to come.

The gentle music played and slowed me down and let me flow at the same speed as Tammy. That is what Tammy asks of us all; to slow down and be in synch with her. She doesn't want our bounce, our energy, our baggage, our negativity. She can feel it the minute we walk through the door and it is alien to her; bringing discomfort. She asks us to join her not make her join us.

14. Palliative Care at Home Part 2

2010-09-22T18:23:00Z

by Susan Ellis of KeyLifeJourneys

On Tuesday the home visiting palliative care doctor diagnosed Tammy to have pneumonia, caught in its early stages. I brought her the antibiotics he prescribed. He asked her first if she wanted them. She said yes, she wanted to live a little longer. Accepting palliative care gives one control of decision making, choice is power. Control is so important to people before they reach the stage of surrender and letting go. Being palliative is first processed at an intellectual level.

While in hospital Tammy made several life and death decisions firmly and confidently. Heart problems had appeared during the bowel surgery and the doctors offered her a stent to be inserted to improve cardiac function. She said no, her heart was providing her with the power she needed to walk to the bathroom. She did not need more than that. The first major decision she made when she came home was to have the DNR order written and posted on the fridge. Do not resuscitate.

Tammy had been given orders to set up an appointment with the oncologist from whom she had previously had chemo therapy. Tammy said, no more chemotherapy, don't make the appointment.

Having made all these decisions Tammy had intellectually accepted the terminal nature of her life and was choosing not to endure procedures to prolong it. Some would believe that making these decisions would lead to feelings of hopelessness and defeatism. But for some to make such decisions is empowering and elating. It also forces caregivers out of their denial - out of the get well soon - mode. It makes those around the dying person be able to walk with them honestly, openly, bravely and with fear - but together. It also provides those sending cards to offer messages or real compassion and provides people with permission to say the things so often left unsaid. There is an avenue of communication. There need be no regrets. So many cards talk of "I will always remember you because…."

Tammy has chosen to die at home. I am the leader of her care team. She said to me recently "I may be dying, but I am dying with dignity." How right she is. She may still be afraid of what is to come, but she is not denying its coming. Last Friday she appeared jaundiced, something that had gone by Saturday. "It's getting closer isn't it?" I could say yes quite freely because there is no game playing now, just honesty. Tammy does not have to dwell on the future; she is truly living in the moment. As the day ends she often says "It's been a good day today." Perhaps it is only when you are being fully present with a dying person, sharing the journey, that you know you are alive for the very first time.

13. Palliative Care at Home

2010-09-21T03:21:00Z

By Susan Ellis of KeyLifeJourneys

I sit here beside my friend of 27 years. Not an easy friendship; one which has caused us much pain, frustration and regret. But somehow "joined at the hip" we have tried to be there for each other in times of crisis.

She was there for me while I had major back surgery during the mid 1980s. She was there for us when my partner was rendered physically dependent by M.S. So now it is my turn to be there.

Tammy was diagnosed with pancreatic cancer a year ago. She underwent the Whipple procedure and then six months of Chemotherapy. She got about 2 months of plain sailing before a bowel obstruction heralded the onward march of the cancer. Tammy is now preparing to die at home with her cat beside her and all the support we can provide. She could have gone straight from the hospital to a palliative care unit but needed closure with her cat. She always had it in her mind that she would ultimately move to a care facility, but now feels comfortable at home and wants to end her days in that setting. Tammy came home from the hospital on August 30th 2010.

Tammy is in control of her decision making and so I have not had to use my Power of Attorney status. But I am the leader of her care team. She has cashed in all her retirement savings and is using them to provide the care she needs. That means 24 hour care as she does not want to be alone. So we have obtained the services of Personal Support Workers from an agency for 17 hours a day. Hiring private duty may cost a great deal less but we were anxious about back up and what happened if the worker got sick. As it is with the agency we have 4 wonderful women who fill the shifts. The Ontario Medical Plan contributes a few hours a week towards the total bill. One shift is from 8pm-8am. The next is from 8am-1pm and the final seven hours are covered by her volunteering friends. Generally the volunteer shifts are from 1-3pm, 3-5pm and 5-8pm. There are three of us who may do more shifts but the others come once a week. All know they have to relieve someone else and wait until the next person arrives.

Tammy has the services of a home visiting nurse who has been so far primarily involved in applying illeostomy and fistula bags which won't leak. Tammy also has a home visiting palliative care doctor.

We keep "visitors" down to a minimum. They are very tiring for Tammy feels the need to be up and sociable. With those who are there for a shift she knows she can be herself. Energy is at a premium and she wants to harness it to walk to the bathroom and empty her own illeostomy bag.

My partner died in a hospital after being taken off life supports. This time there will be no hospital. We are looking for a gentle peaceful dignified transition. We are looking to provide quality of life before a good death. Share the journey.

12. Attitude Towards Service

2010-03-26T22:22:00Z

By Susan Ellis of Keylifejourneys

When creating websites and writing blogs one often wonders "is there anyone out there?"

This week I was rewarded by a blog comment from Australia and a delightful letter from Morro Bay, California. Here is that letter -

"My name is Camden and I am a 22 year old female college student who has been in the past and will be at some point in the future, a caregiver for my grandparents who raised me. I know that care giving is part of my spiritual path as it allows me to show my grandparents the love, respect, work, and patience that they afforded me as a child. I just wanted to drop you a line and give a sincere thank you for this website as I know it's resources will help me transition through these experiences with open eyes and an open heart."

When care giving comes freely and with desire it has to be a growth experience. Giving from the heart expands our whole being. When resentment creeps into the care giving, the entire energy pattern changes. Indeed it is not good for our health.

I have written before about how the presence of a negative attitude impacts on the care giver role. Let me focus here on the impact of positive energy when care giving. Many wise people have talked about the value of service to not only the individual, but to the world.

It seems to me that when I had time to give to my care giving I enjoyed the role; I relaxed into it embracing the physical contact and meaningful communication. It was easy to be patient and I was stimulated by creative problem solving. But when I was rushed, juggling responsibilities, and when tired, the role became less of a healthy challenge and more of a stress filled burden. So we need to learn time management, acquire the ability to ask for help and get plenty of sleep so that giving of ourselves does not drain us.

I hope caregivers, and potential care givers, take time to read the following quotations. Apply them to your own lives; absorb the importance of the role that you play. Many short-sightedly believe that care giving is a waste of time; time which should be used to fulfill more lofty ideals. Indeed our society reinforces that outlook. But rest assured we can switch around our attitude to the task and know that the challenge is ours to accept and from which to grow.

Enjoy these words of wisdom.

Norman Cousins
If something comes to life in others because of you, then you have made an approach to immortality .

Mahatma Gandhi
The fragrance always remains on the hand that gives the rose.

Mahatma Gandhi

The best way to find yourself is to lose yourself in the service of others.

Anthony Robbins
Only those who have learned the power of sincere and selfless contribution experience life's deepest joy: true fulfillment.

John Wooden

You can't live a perfect day without doing something for someone who will never be able to repay you.

Elbert Hubbard (1856 - 1915) US author
All success consists in this: You are doing something for somebody - benefiting humanity - and the feeling of success comes from the consciousness of this.

Emily Dickinson
If I can stop one heart from breaking,
I shall not live in vain;
If I can ease one life the aching,
Or cool one pain,
Or help one fainting robin
Up to his nest again,
I shall not live in vain.

Albert Einstein:

Only a life lived for others is a life worthwhile.

Albert Schweitzer:

I don't know what your destiny will be, but one thing I do know: the only ones among you who will be really happy are those who have sought and found how to serve.

Eleanor Roosevelt:

When will our consciences grow so tender that we will act to prevent human misery rather than avenge it?

Felix Adler:

To care for anyone else enough to make their problems one's own, is ever the beginning of one's real ethical development.

Herman Melville:

We cannot live for ourselves alone. Our lives are connected by a thousand invisible threads, and along these sympathetic fibres, our actions run as causes and return to us as results.

Ralph Waldo Emerson:

It is one of the most beautiful compensations of life that no man can sincerely try to help another without helping himself.

Woodrow Wilson:

If you will think about what you ought to do for other people, your character will take care of itself. Character is a by-product, and any man who devotes himself to its cultivation in his own case will become a selfish prig.

Helen Keller

Happiness cannot come from without. It must come from within. It is not what we see and touch or that which others do for us which makes us happy; it is that which we think and feel and do, first for the other fellow and then for ourselves.

Muhammad Ali

Service to others is the rent you pay for your room here on earth.

Oprah Winfrey O Magazine, September 2002
I've come to believe that each of us has a personal calling that's as unique as a fingerprint - and that the best way to succeed is to discover what you love and then find a way to offer it to others in the form of service, working hard, and also allowing the energy of the universe to lead you.

Lateef Warnick - source: "One Source of Universal Love"

The greatest life one can have is of service. Give joy, happiness, bliss, laughter, wisdom, prosperity, love & light to others. By doing so, you tap into the Infinite Source within ensuring that you will never have to do without these "treasures" yourself!

11. There Are No Magic Bullets!

2010-03-13T21:49:00Z

By Patty Randall, For Neighbours December 31, 2009

I'd never thought of birthdays as important milestones. But, after years of care giving, I've drastically changed my attitude.

It started innocently, wondering, how many future birthdays I might expect until my independence was compromised to some degree, limiting my options on that special day.

Oh-oh! No longer would I approach birthdays simply as a number counted from the beginning. I would view them in reverse, in terms of what I could enjoy, if I knew exactly what I wanted, didn't leave plans to the last minute and took action well-in-advance to make it happen.

Now, instead of dismissing birthdays as 'another year growing older' I pick a memorable experience and with detailed preparation make each a 'milestone birthday'.

There has been 'my Marrakech birthday' when I traveled to Morocco, Northern Africa and celebrated in the ancient city of Marrakech, on a riad rooftop balcony sipping champagne.

My 'staycation birthday' when I took the day off, checked into a spa-hotel and went sightseeing in my own city. And the latest, 'my golf birthday' when as a beginner, I committed to an intensive 3 day, 8 hours per day, one-on-one instruction with a golf-pro at an academy in Arizona.

Since we can no longer deny that we are going to live long lives, why not view our long life span with a positive attitude. It's time to take emotion out of the equation when it comes to 'aging'.

Of course, having a positive frame-of-mind doesn't mean ostriching about our old-old age, but just the opposite. Which brings me to my next point.

We know our chances of having health problems also increase with a longer life span and consequently, our chances of needing care also increase.

Maybe we need to approach our care-years planning as we do our retirement planning. Envision what we want it to look like and working backwards from there, put appropriate plans in place for when we reach that time. (It sure works for birthday planning!)

Whether single, widowed, divorced, a married boomer or a senior couple, everyone should have a plan as to how they are going to be looked after should they need 'significant help'.

Our long-term care is the single largest out-of-pocket cost for persons over 60. Whether delivered in our own homes, in our children's homes, in assisted living retirement communities or in nursing homes, we have to expect to pay for it . . . somehow.

There are no easy solutions, no magic-bullets. These are our options if we want quality care in our future:

1. If our family is wealthy, we can self-fund our expenses

2. If we have personal savings and assets and aren't concerned about protecting our children's inheritances, we can access these

3. If we feel financially secure with guaranteed monthly incomes from annuities/pensions, we can use these

4. If we own our mortgage-free home, we can obtain an advance on its value as a reverse mortgage and use these tax-free funds. (Interest accumulates; the debt doesn't need to be paid until death, sale of the house or upon moving)

5. If we have whole or universal life insurance policies, we may consider these. (With whole insurance, we could cash-in the policy ending coverage or loan against it to access funds, realizing the death benefit decreases. With universal life, we might use the savings component or the policy as loan collateral)
6. If we have workplace disability insurance (DI) coverage and are unable to do our jobs, the prescribed monthly benefits can be used

7. If we own a critical illness (CI) insurance policy, we'll receive a lump-sum cash benefit if diagnosed with any of the listed illnesses; this sum can be used as wanted

8. If we've purchased a long-term care insurance policy (LTCI) we would use this as a specific kind of insurance which provides stated daily, weekly or monthly benefits 'to cover the costs associated directly with care'

9. We can rely on available provincial government programs (Remember, home-care and nursing home services are included in our Canada Health Act as an 'extended health care service' and, as such, are not and never have been a medically necessary insured service. Thus, they aren't guaranteed in the same way as hospital and doctor services are, but provided 'at the discretion of each province')

10. Note: Viatical settlements aren't available, they're illegal in most provinces (i. e. a terminally ill person who owns a life insurance policy sells it to a third party, which agrees to pay the premiums and pay the insured individual an amount less than the policy's value)
As for my personal plan to fund my short and/or long term care, it includes a combination of # 2, 3, 7, 8 (I own two of these) and 9 plus 4 if need be.

My best wishes with your discussions, Patty

Patty Randall, a professional speaker, media commentator and author, is widely considered a leading authority in Canada on all the practical ways to plan for your own or a loved one's care-years.

To learn more visit her website www.longtermcarecanada.com
or e-mail her at pattyr@telus. net
© Copyright (c) The Calgary Herald

10. How Can I Take Better Care of My Loved Ones Experiencing Incontinence

2010-02-16T16:39:00Z

Written by: Jenn Weesies

Each February everyone puts a lot of effort into demonstrating their feelings towards their loved ones. They make or buy gifts, plan special excursions and recommit their lives to each other. They act in such a way that makes their special someone feel loved, cared for and cherished. Some people though, will argue that this demonstration of affection toward loved ones shouldn't just occur during February but should happen all year long as well. Caregivers and family members of people experiencing incontinence are constantly striving to provide the best care for their loved ones to demonstrate their affection. However, as many know, caring for their loved one's unique incontinence situation can be difficult.

Incontinence is not uncommon. Urinary incontinence affects more than 200 million people worldwide and nearly 25 million American adults are currently experiencing temporary or chronic urinary incontinence. According to the National Association for Incontinence (NAFC), incontinence characteristically affects more women than men. In fact, one out of four women and one out of eight men experience incontinence.

Enhancing the quality of care you are providing your loved ones experiencing incontinence means improving the quality of control with the right products and right fit at the best price. Here are three ways that can help you demonstrate your affection towards your loved ones experiencing incontinence by ramping up the quality of your care.

1. Buy hospital grade incontinence care products to keep your loved one comfortable.
Hospital grade incontinence care products are far superior to the products that you can buy at a local superstore. These products are better quality and can increase your assurance in managing your loved one's incontinence. They provide the highest level of protection, superior odor protection, the best fit, and the latest technology to quickly draw wetness caused by urinary incontinence away from your loved one's body. With hospital grade products you can be sure that your loved one will remain dry and comfortable all day long.

2. Buy from a knowledgeable home health care center or medical equipment supply company.
Highly regarded home health care centers and medical equipment supply companies focus on ongoing personalized management for your loved one's unique urinary incontinence situation. They can provide personal support over the phone, online and in the store to find the best incontinence care products for your loved one. Briefs, protective underwear, pads and liners are available in gender specific fits and an array of sizes and protection levels. Home health care centers and medical equipment supply companies can offer insight to customize incontinence care products for your loved one. They can also recommend products that are easy to get on and to change, improving the ease of care. Their knowledge can enhance quality of life for individuals dealing with incontinence and can help caregivers and families provide more supportive care.

3. Enroll in a home delivery program to save money and time.
Experienced home health care centers and medical equipment supply companies can connect you with money and time saving options that other stores cannot. The best offer discreet home delivery programs that can supply caregivers and family members with the convenience of on-time supplies at their doorstep with a range of cost effective savings plans. These programs allow you to order the highest quality products in bulk. After all, buying and ordering incontinence care products should not have to take precious time away from spending moments with your loved ones.

Demonstrate your feelings towards your loved one experiencing incontinence all year long through providing them the best care and incontinence care products possible. Seek the help from a knowledgeable home health care center or medical equipment supply company. They have resources and support staff dedicated to making your job easier and your loved ones happy and comfortable.

About the Author
Binson's Home Health Care Centers began in Center Line, Mich. and has grown to the home health care center it is today. Currently, there are centers in Michigan and Florida. For more information about incontinence products and programs call Binson's at 888-246-7667 or visit: http://www.binsons.com/

article obtained from Content Crooner

9. Peace Begins at Home

2010-02-11T17:07:00Z

When we face major changes in our life -and becoming a care giver ranks as pretty major - we become aware of emotional turmoil within. I've just received this, as yet, unpublished article by friend and colleague Barbara McDowall of www.AuthenticLives.com I believe it illustrates a practice that care givers might embrace to remove feelings of helplessness and restore some emotional calm .

Just back from almost 2 weeks in my favourite part of the country, kind of my spiritual home away from home – Canada’s east coast and PEI in particular. When I spend any time along our Atlantic seaboard (Nova Scotia in particular), I invariably find myself asking “How can I live and work here”? And I feel I am getting closer to having an answer to that question.

Along the way to PEI, I happened to notice one of the ubiquitous roadside signs. This one said PEACE BEGINS AT HOME. It got me thinking about what that meant tome. Personally, I had to ask myself how peaceful was I within myself (my home), so to speak? Based on my level of personal peace, what was the impact of me being peaceful on the world around me? To paraphrase Forrest Gump, “peaceful is as peaceful does.”

With that awareness how can I then make a positive contribution to world peace through intentionally and consciously becoming more peaceful within myself? What would I need to change about me to make that happen?

To change or improve any habit or skill most often requires some kind of unlearning/relearning or training regimen. With that in mind, what regular program or practice will help me shift my focus to peace within. What works best for me is a regular practice of daily meditation of no less than 30 minutes first thing in the morning and30 minutes at the end of my day. Frequent affirmations such as “I am a peaceful person and I bring peace to the world” are helpful in reminding me who I am and wish to become more of.

Gandhi said it so well many years ago – be the change you wish to see in the world. If I wish to see peace in the world, I must be grounded in peace, to the point that should I meet someone who doesn’t speak my language, it is clear I am grounded in peace because I am that person in the world – they can see it in action.

Peace is not something that can be imposed externally. World peace will become a more probable reality every time one or more of us intentionally and consciously choose to be peace in the world. Thankfully, this energy is an ever-increasing part of our world today. Witness the prominence of Eastern philosophies which support personal awareness, personal responsibility as essential components to creating an aware and responsible world with a commitment to ending judgment and shame.

Buddhism continues to offer me the opportunity to love myself, to love others, and to love my enemies. It offers the compassionate lens to our common “suffering” and our ability to look at ourselves as microcosms of the world. If we can be honest with ourselves, fully loving and approving of ourselves, our innately compassionate hearts become engaged in this life, as we open up to our commonality and our shared wish for a better life for ourselves, for our children and for our beloved planet.

I am grateful for that roadside billboard and for its reminder of one of many truths – as within, so without.

Barbara McDowall is a spiritual teacher, mentor, doula for the dying and celebrant (weddings,baptisms, celebrations of life). Located in Toronto, Canada, she is available for consultation by phone or in person. For more information, and visit http://www.AuthenticLives.com

8. Support For the New Caregiver

2010-01-31T20:36:00Z

By Susan Ellis of Keylifejourneys

It is a cold winter's day here in Toronto. As I write this I look out at my bare garden, bereft of snow. It looks almost as if… But I know I can't go out and start digging, preparing the earth for planting. Looks are deceptive. Step out the door and I will be in sub freezing temperatures. Try forcing my spade into the earth and I will discover a solid mass, earth frozen hard as concrete. The timing is not right.

Care giving is like that. The timing is never appropriate. The conditions are never right and without experience - how do we know what will work and what won't?

When my partner's Multiple Sclerosis made it unsafe for her to be on her own, the staff in the rehabilitation hospital started filling papers for a long term care institution. I'd never cared for a dependent person before, I'd never had children for example. But I said. "She's coming home with me." What a journey. In all reality I didn't know what I was in for.

I wonder if there had been someone then who could have given me some words of wisdom to help me prepare, would it have helped? If there were some consoling words I could have focused on in the cold dark hours before the dawn when I was unable to sleep because of fear of failing her and loss of confidence, would it have been easier?

I was a caregiver for 10 years before death separated me from my role. During those years we created 4 videos to help caregivers and those whose role it is to support caregivers. But now I want to write some e-books. I have ten years of acquired wisdom. What about you? Will you help me?

I've often thought "if I'd only known then what I know now..."

Could you please share some of those words of wisdom for people about to face what you have already experienced? I will make the free e-book available to everyone. Everyone who has cared for a parent, a partner or a child has wisdom to share.

Please send me a single sentence or a paragraph sharing something you wished you'd known from the start. I know others need us. I can be reached at sue@keylifejourneys.com or write a comment below. Alternatively Click here to fill out this Survey.

7. Alzheimer's in the Family

2010-01-11T16:27:00Z

By Susan Ellis of KeyLifeJourneys

Alzheimer's in the Family is a website I have discussed in these pages before. This is just a reminder that Suzanne Holman hosts a phone in care giver support group. These calls are on the second Monday of the month - like today. For more information about the support group.

6. A Breakthough in Multiple Sclerosis Treatment

2009-11-23T03:02:00Z

By Susan Ellis

A Canadian T.V. show has recently aired a story on the work of an Italian physician trying to find a cure for his wife who has M.S. He has made the discovery that all M.S patients he has tested show the narrowing of veins in chest or neck. This is disrupting blood flow to the brain. He calls it Chronic Cerebro-spinal Venous Insufficiency. When blood flow is normalized with the Liberation Treatment, the functioning of patients with M.S. improves.

Here is a link to the TV show.

My first reaction was a selfish one. Why couldn't this have happened 20 years ago? My partner had primary progressive MS for ten years. She died in 1999. What if….

The MS community is all abuzz with this latest news. I'm sure if I had MS I would be at my doctor's office demanding that my veins be looked at. If this really is the smoking gun, then routine testing of blood flow could become a normal procedure in countries like Canada with a high rate of M.S.

Meanwhile we have many thousands of young to middle aged people irreparably damaged by the disease with just as many caregivers trying to provide quality of life. For some perhaps the clock could be turned back, for many too much damage has already been done.

While there now seems to be a ray of hope for the future, let us not forget those for whom this news has come too late. If you are feeling some bitterness at this time, don't deny it. Process it, live with it and then come through it. Share in someone else's joy and in so doing, compassion will come back to support you.

Do look at my last post or click here. I am offering copies of the 4 videos my partner and I made during those ten yours of disability, for free.

5. Announcing FREE Gift Offering While Supplies Last!

2009-11-18T01:32:00Z

by Susan Ellis of Key Life Journeys

My website Keylifejourneys.com has always been one for those who see the journeys of their lives as spiritual ones. It started out as a website for care giving journeys and is forever expanding.

As time marches on and new technologies make those of the past either obsolete, or less inviting, people find the era of the VHS video tape has past. However many of you still use the video cassette player. It is to those people that I now make this offer.

For just the price of the shipping and handling, I am offering my video VHS tapes free of charge.

Go to caregiver resources on my website to familiarize yourself with my care giving videos. Most are in the NTSC format, suitable for North America. But I do have a few PAL format suitable for playing in the U.K.

I am also aware that many of you do not like sending money over the internet and so for this offer only I am accepting money orders by mail.

Please email me at sue@smeproductions.com and let me know which tapes you would like to receive.
I will email you an invoice and confirmation that I have what you requested.

Then mail money order to
SME Productions
P.O.Box 22060, 45 Overlea Blvd
Toronto, Ontario
M4H 1C3
Canada

Make the money order payable to Susan M. Ellis
Shipping and handling is $12.00 Canadian - for that you may order ONE OR TWO items to be sent regular mail. Please indicate PAL format if needed.Otherwise the items sent will be NTSC.

Currently available as a VHS video tape -

Aspects of Caring
Aspects of Living
Practical Aspects of Everyday life
Trilogy of Caring (the above three all on one tape)
Aspects of Hope
Trilogy of Caring and Aspects of Hope (all four on one tape)

Please take advantage of this offer. These videos reflect a remarkable journey.

Best wishes
Sue

4. Comfort for Caregivers Telesummit

2009-11-04T15:25:00Z

By Susan Ellis if Keylifejourneys

November is National Caregivers Month and currently on the internet or by phone you can hook into the Comfort for Caregivers Telesummit. Available for three weeks are hour long talks by a team of experts - physicians, financial consultants, national speakers, healers, and professional caregivers - to help you succeed in your valuable role as a caregiver. Each talk is available for replay for 24 hours after the original talk. All this is free of charge. If you want to have copies of the talks on hard copy, they are for sale.

On Thursday, November 5 at 6 pm Eastern Time is Suzanne Holman. She is a coach and consultant who supports those of you who are facing family medical challenges in keeping your body, brain and business as healthy as possible.
Suzanne has a website at http://www.AlzheimersintheFamily.com

3. Always Bad Timing

2009-01-30T01:18:00Z

By Susan Ellis of k eylifejourneys

When the diagnosis comes and roles have to change, a caregiver is needed and is assigned. When it is a parent who gets sick it is usually the daughter or daughter in law who must take up the responsibility. A spouse is expected to care for a spouse.

With the changed role comes a changed life. The goals and dreams, the expectation of what was to come next, get dashed. When taking on the caregiver role, what were your plans for life? Were you looking to get promoted in your job, further your education, retire and start traveling, focus on bringing up the teenage children? Where indeed is your focus? All of a sudden the brakes are put on those aspirations and a new role appears - Care giving. The dreams you had may have to be put on the back burner or shelved for life.

Shelved for life! That sends a shudder of reality down the spine. Suddenly the care giving role takes on a new appearance. Is it going to be the thing that stands in the way of that which we thought we was going to become in life? Will we be able to achieve what we thought was our life's purpose? The other painful reality is that we may have been putting off satisfying our needs, reaching our goals, for the sake of others. Their needs had to come first. But we always expected that one day it was going to be our turn…

I may be adding a bit of drama here but not without justification. The caregiver will face an identity crisis when the extent of the new role becomes clear. There will be a reaction of anger, frustration and depression and an overwhelming sense of guilt at experiencing these feelings.

When this reality hit me I had a false sense of bravado. I expected that I would be able to cope, that I had the skills, that I was strong etc. This didn't last long. It did not take long before the feelings of inadequacy and failure flooded in. But they were feelings I was not easily able to share.

It was only after I had worked my way through accepting the changes that I could start to see what I had gained, not what I had lost. I could see that some parts of my life would have to be put on hold but I still had opportunities to have my needs met. I also started realizing that I was learning more about myself and whom I was, than I could have done any other way. I was learning from experience and was able to share that with others. Indeed my experiences were not wasted, they were of use. So often we hear of tragedies striking families and after it is over there has been a greater gift to humanity.

Just occasionally I was aware that there were gifts hidden in dark clouds. I learned about the strength and frailty of relationships. I learned about friendships and value systems. I began to understand myself more. But none of this could happen until I had stopped believing that this was all very bad timing. Once I had accepted the fact that this was my life journey playing itself out just the way it was supposed to be played, that I started growing.

2. The Stress of Diagnosis

2008-11-24T23:26:00Z

Reaching a diagnosis for many diseases takes a long time. Symptoms appear and there are tests. Symptoms are often denied by the individual or at first minimized by the professional. Symptoms may make past activity and work impossible causing great strain on family resources. In some situation changes in behavior or memory are insidiously destroying relationships before they can be identified as symptoms of something being wrong.

This means that by the time the diagnosis has been made and the family is expected to get on with it, major rifts in its structure and solidarity have appeared. Indeed by the time the family is expected to "pull together," family members may not be talking to each other; may feel let down, taken advantage of or abused by others.

When this is the reality, how can a family problem solve, decision make and deal with this situation? If this is your position it is imperative that you get professional help. Chances are you are so angry with what is going on that you are all taking it out on each other.

It takes a lot of work to cease from blaming, to stop finding fault. The dynamics are too complex and confusing to be handled alone. It is not a sign of weakness to need help at this time. It is a gift to find someone who will listen and not pass judgment, hear your pain without telling you what to do. This is indeed what every member of the family needs. Families function because of unique inter-dependencies, everyone has a specific role - bread winner, scapegoat to name just two. When disease hits, the security of this family web is torn apart. Everyone feels a tug of insecurity because that familiar role will be changed for ever.

I remember Joe was the patriarch of the family. His word was law. His adult sons were still afraid of him and his wife just did what was expected of her. None dared step out of line. No one stood up to him. The family unit functioned successfully when it played by these rules. Joe was 69 when he started losing his memory, leaving the taps on in the bathroom, failing to dress himself properly and take care of his personal hygiene.

This family did not just have the stress of caring for someone with Alzheimer's disease; they had to learn how to relate differently to him and to each other. All their roles in the family changed. The sons, who were now married with children of their own, could not support their mother because they were still holding fear for the man who now shuffled behind is wife everywhere she went.

It is often believed that the only person who is suffering is the person with the disease. The labeled person has the right to grieve and be angry because of the changes that have taken place. But everyone who has been in relationship with that person in the past will have to adjust to a change in their life. We generally deal with change by seeing it as a loss of what was. So we all must grieve.

No one who enters the care giving role does so without needing to grieve the loss of the past. The family unit has been changed and so it must grieve. If the family feels too stressed to talk it over together, or one is alone and has no family to share the grief with, then find a professional to hear the pain.

1. Looking Back

2008-11-03T14:14:56Z

Nine years have passed since I lost the role of caregiver and began grieving the death of my partner from Multiple Sclerosis. I am forever changed by that experience. As I come in contact with others who have had similar journeys I realize that we all have gifts to share with each other.

This was not possible for people like my mother. When my father started getting confused and losing his memory she had to keep that information to herself. The society she lived in was one where you did not "air your dirty linen on the line." Any form of suffering was a "cross you had to bear" and the choices you made were considered the "bed you had made and now you had to lay in it."

Disease and deformity were considered private issues and hidden away from public appraisal. It meant that no caregiver support was available. I watched my mother suffer in silence. I lived in Canada, she lived across the pond. On one of my visits, in front of a group of her friends I announced "Did you know my father has Alzheimer's disease?"

The door was opened and discussion could take place. Things have changed. I hope this blog will be accepted as a gift by someone out there who needs it.