Middle Aged Caregivers

I found when caring for my failing mother that it important to look after myself. Now that I am on the path to recovery, I find that it is easier to look after myself. There are many things one must do for others, but you must look after oneself to be any good to others in your care.

• Eat regularly - smaller portions, lots of fruits, veggies, whole grains, less meat and proteins since we tend not to need so many calories in middle age, source some anti-aging foods
  
• Get exercise - 30 minutes per day, come hell or high water!
• Look after your physical and mental health needs -take a break by going away, getting in respite care through friends, family., or the many non-profit respite care agencies
• Do meditation on a regular basis - listen to that still small voice
• Get professional help for your biological, physiological, social and psychological needs

There are short-terms activities that help:

• Get some arts culture in your life: go to the theatre, a concert, or visit a gallery
• Go for a walk in the country
• Sit by a lakeshore
• Get your face, hair, nails done
  
• Give yourself permission ... to fail, to be angry, to take each day as it comes
• Buy yourself some flowers
  

My difficulties were compounded by my diagnosis of clinical depression while caregiving, as well as menopause symptoms. I found during my research that as a woman going through menopause, with symptoms of stress, I was at great risk for depression. I am now receiving hormone therapy, after a saliva test showed that my estrogen levels were low and that my progesterone was minimal. This imbalance, due to surgical menopause in 1995, resulted in menopausal symptoms that included depression.

I worked hard to advocate for my parents, while working full time and caring for my adult children. After facing depression, a year on antidepressants and a focus on healthy eating and daily exercise have me feeling better. Depression is a difficult disorder, as it is unspoken, unnamed, and often undiagnosed. Many things can trigger it, including adolescence, hormonal changes, moving through life passages, a new job, or perceived job stress. I went into a mild depression and sought counselling after my divorce; having been in a marriage of sixteen years, it was a shock. I used the Employee Assistance Program to find someone to talk to about the issues I had been facing. The research says that depression can return with new stressors, such as work pressures, perimenopause, worrying over young or adult children, ailing parents, or bereavement. I have done extensive research on it to understand it better. It was quite a learning experience.

To combat the stress, I continued to sing in the Ottawa Choral Society, a professional choir, and to exercised regularly. I tried various homeopathic menopause remedies such as Black Cohosh but none of these things seemed to work.

Avis (2003), in an attempt to determine the answer to the question of depression as it relates to perimenopause and menopause, concluded that these factors did not cause depression. The stage of life in which a woman finds herself: an empty nest (or adult children returning home), ailing parents, and other life passages, can cause a depressive reaction unrelated to the changing hormones (estrogen and progesterone). She felt that most studies examined patients, rather than the general population, and many women do not suffer from depression during menopause. Further examination found that the length of menopause and more than twenty-seven months of symptoms (hot flushes, night sweats, and menstrual problems) resulted in an increased likelihood of depression due to the effects of the symptoms, rather than from the condition itself.

My symptoms included: suicidal ideations, inability to make (simple) decisions, crying, increased acne, irritability, insomnia, hot flushes, overeating & weight gain, panic attacks, aversion to loud noises especially people but fireworks set me off, sense of failure, sense of defeat, lack of control of my life (which was true!), low self-esteem, inability to do my work.

Dementia diagnosis

In a recent article about dementia drugs, one journalist cites information that should be heeded by health care providers. Drugs are fairly readily prescribed, but are not necessarily the best way to go for ailing seniors. At the time of this photo dad was on 8 different drugs.

Alzheimer’s disease accounts for 70% of dementia cases and affects 5% of the population age 65 and over (Blazer, 1996 and Regier et al., 1988, as cited in Pinel, 2008). It affects 40% of those over age 90 (Williams, 1995) and patients die, on average, eight to ten years after the onset of dementia symptoms. The number of Alzheimer’s cases is predicted to increase by twenty-five percent by the year 2010 (Cummings and Jeste, 1999). Yet no one had examined Dad for these signs. Not all dementia is Alzheimer’s disease, but the work done by the Alzheimer’s Society has provided much information on the signs that usually develop two to three years before dementia sets in: difficulty learning and remembering verbal material. The first significant sign is memory loss. It affects simple activities: eating, speaking, recognition of family members, and bladder control. Callahan, et al. (1995) found that 23.5 percent of those with moderate to severe dementia were identified as having a dementia syndrome.

Family members have to continue to be advocate for those with dementia. Those in LTC, most of whom have Alternate Decision Makers such as family members, have little control over the drugs that their loved ones receive. It is a shame, too, that so few of these drugs are tested on seniors above age 75, as it is only recently that there was enough of a population in this age group to make such research viable. Every family member should attend meetings with seniors and ask questions.

There are many contraindications for particular drug interactions and comborbidities that require monitoring of polypharmacy. Speak to your pharmacist if you have questions.

Glossary of terms

This list is found in the back of my book.

Activities of Daily Living (ADL)--bathing, grooming, toileting, dressing, eating, and other activities necessary for daily living and survival

Agnosia--failure to recognize objects

Aphasia--a disturbance in receptive or expressive language

Apnea--temporary cessations in breathing; this is a sign of approaching death in palliative care patients

Apraxia--loss of understanding of the uses of things

Assistive device--a mechanical aid to make ADL easier

Benign brain tumour--a slow-growing tumour that does not tend to invade nearby cells

Biopsychosocial issues--interrelated biological, psychological, and sociological issues

Carcinogen--a substance that has been proven to cause cancer in living cells

Caregiver--one who provides care

Care recipient--one who receives care

Comorbidities--the effect of all disorders or diseases on an individual in addition to the primary health issue

Dementia--an acquired, persistent impairment in two or more cognitive areas of executive functions; profound mental incapacity

Delirium--• Disturbance of consciousness

• Disorientation, wandering attention, confusion, hallucinations

Dysphagia--choking and swallowing issues

Executive functions--planning, organizing, sequencing, and abstract thought

Frail--premorbid: at risk for biopsychosocial issues; inability to manage physical, social, and emotional needs (ADL)

Geriatric--of or relating to old age or old people

Independent Activities of Daily Living (IADL)--caring for pets and dependents; communicating with others effectively; managing finances and health; doing housework, meal preparation, and cleanup; looking after transportation and safety procedures

Infarct--a small, localized area of dead tissue caused by an inadequate blood supply; can result from blood clots or diabetes

Incontinence--inability to control evacuation of urine or feces

Long-term care (LTC) facility/home--a health care facility for those with physical disabilities that offers 24/7 nursing staff; formerly called a nursing home

Malignant brain tumour--a tumour that grows quickly and invades surrounding cells; these kinds of tumours are the least likely to be totally removed surgically, since they invade and damage important structures

Metastasize--when cancer cells break off from the original site and spread to other parts of the body to cause malignancy there

Morbidity--the quality of disease; the extent of illness, injury, or disability in a defined population

Nurse practitioner--a nurse who meets primary health care needs, conducts physical examinations, selects treatment plans, and identifies medication requirements

Nursing home--now called a long-term care home; differs from a retirement home

Orphan patient--a person without a family physician

Palliative care--giving care at the last stages of life

Polypharmacy--taking too many pharmaceuticals/prescription drugs

Premorbidities--factors that may lead to death

Primary care--basic or general health care from the medical system

Registered nurse (RN)--a nurse who is licensed to practise and is a registered member of a nurses’ association

Registered practical nurse (RPN)--a person who is registered by a professional association of nurses as having been trained to perform basic nursing tasks under the direction of a physician or an RN.

Respite care--temporary institutional or home care of a dependent ill or handicapped person to give respite to the usual caregiver

Retirement home--a private residence for seniors (profit or non-profit); governed by the Landlord Tenant Act

Sleep apnea--intermittent failure to breathe during sleep

Subcortical issues--issues such as plaque and damaged brain cells; physical evidence manifests as dementia

Supportive living--also called assisted living, in which supports are on call 24/7

Long-Term Care issues

With more in the news about Long-Term Care (LTC) issues, formerly called 'nursing homes', we are hard-pressed to feel an confidence that our twilight years will be star-filled. The bottom line governs so much of what we do in this world. Not much nursing is done these days as most of the physical care has been assigned to Personal Support Workers (PSW).

The Toronto Star cites may issues, on being the large number of violations on the Ministry website where the documentation of LTC standards is said to occur. Many violations, in my experience, are the result of a lack of personal with too much paperwork. Shirley Sharkies' report makes recommendations in this area.

Recently, a LTC home in east Toronto has found caregivers trying to protect the needs of their residents. In a headline, "Staff risk firing for 'hoarding' diapers", would appear that unwritten rules govern policies in these so-called 'nursing homes'. With nurses in such a shortage, we cimply canot call them ursing homes any more! Most of the day-to-day care is undertaken by Personal Support Workers (PSW). They are hard to find, as well! Staff remains a big issue in LTC.

In May, 2008, a woman left alone too long strangled herself on a wheelchair seat belt. This is preventable with more staff maintaining more vigilance. Each LTC home has its own culture and those part of a chain do not seem either better or worse than others. We know that those doing a great job empower others to perform in a similar fashion. In an industry with so much focus on the negatives, we must ensure that those doing a good job are not ignored and can be celebrated. In July, 2008, Ombudsman Andre Marin will figure out what he is going to investigate.

I can attest that each employee and each LTC home is different. Those in the news tend not to be ones in which residents are respected as individuals, in which staff go over and above their time, energy, education and training. There are pitfalls is painting all LTC homes with the same brush. I met many, many PSW ans nurses while my father and mother were in various levels of care. I found that most continue to treat residents as they would want to be treated.

It is unfortunate that the former health minister was replaced and the learning process had to begin again for the new health minister, rookie David Caplan. I anxiously await, not with baited breath, as opposition health critics have few answers and our big issue continues to be the lack of trained staff members in all areas of health care.

Glossary of terms

Activities of Daily Living (ADL)--bathing, grooming, toileting, dressing, eating, necessary for daily living and survival

Comorbidities--the effect of all disorders or diseases on an individual in addition to the primary health issue

Dementia--an acquired, persistent impairment in two or more cognitive areas of executive functions; profound mental incapacity

Delirium--a disturbance of consciousness, or disorientation, wandering attention, confusion, hallucinations

Executive functions--planning, organizing, sequencing, and abstract thought

Frail--premorbid: at risk for biopsychosocial issues; inability to manage physical, social, and emotional needs (ADL)

Independent Activities of Daily Living (IADL)--caring for pets and dependents; communicating with others effectively; managing finances and health; doing housework, meal preparation, and clean-up; looking after transportation and safety procedures

Long-term care (LTC) facility/home--a health care facility for those with physical disabilities that offers 24/7 nursing staff; formerly called a nursing home

Polypharmacy--taking too many pharmaceuticals/prescription drugs

Respite care--temporary care of a dependent ill or handicapped person to give respite to the usual caregiver

Retirement home--a private residence for seniors (profit or non-profit); governed by the Landlord Tenant Act

Supportive living--also assisted living, in which supports are on call 24/7
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A more complete glossary, relating to seniors, aging, cancer and brain tumours, is found in my book. Order yours now: GSPH order Living & Dying With Digity

Acronyms related to aging

Acronyms--Senior Care

ADL Activities of Daily Living

ADP Assistive Devices Program

ALC Alternate Level of Care (hospital designation)

CAT Scan
CT Scan Computerized Axial Tomography (takes x-rays of the brain)

CCAC Community Care Access Center

CCC Complex Continuing Care

CHC Community Health Centres

ED Emergency Department

ER Emergency Room

FHT Family Health Team (now mandated across the province in Ontario)

FIPPA Freedom of Information and Protection of Privacy Act

HHR Human Health Resources

HSP Health Service Plan

IHSP Integrated Health Service Plan

IADL Instrumental Activities of Daily Living

ICE Isolated Community Experience (to serve seniors in rural areas)

IGS Integrated Geriatric Systems

LHIN Local Health Integration Network

LTC Long-Term Care

MIS Management Information System

MLAA Ministry LHIN Articulation Agreement (data collection)

MOHLTC Ministry of Health & Long-Term Care (Ontario)

MRI Magnetic Resonance Imaging (MRI Scan uses a magnet and radio waves to take pictures of the brain. It provides more detail than a CAT scan.)

NSM North Simcoe Muskoka

OCSA Ontario Community Support Association

PACE Program of All-inclusive Care for the Elderly

PASD Personal Services Assistance Device

PEC Public Education Coordinator

PHIPA Personal Health Information Protection Act

PRC Psychogeriatric Resource Consultant

PSW Personal Support Worker

RAI Resident Assessment Instrument (used in home care and palliative care)

RGP Regional Geriatric Program

RISC Regional Integrated Senior Centre

SGS Specialized Geriatric Services

TPO Transfer Payment Organization (governments have been outsourcing health care to various agencies, transferring money to them. They are governed by boards of directors.)

Choosing a LTC facility

It is now time for Dad to be placed into another care center. I spoke to Gay, the manager at his reitrement home, and I spoke to case Community Care Access Centre (CCAC) case manager, Kathleen, who said that we have to put him on a waiting list. She says it is best to get him on a list soon, before it becomes an emergency to get him from a hospital into a nursing home, as he can be placed anywhere up to 150 km away. I do some research.

We look around and have a tour through Leisureworld in Gravenhurst. I do not think that there would be much difference in these government-subsidized institutions and we are pleased with the Gravenhurst location. We have to find a location that suits us, since we know we’d be visiting a lot. I filled in the forms and take power of attorney for him. Dad is no longer able to make decisions. His cognitive functions are quite limited. He cannot even keep track of his pills anymore and telling time is now beyond him. There are a number of forms. His attention and memory are gone, but he isn’t a risk for running away; he simply needs 24 hour nursing care.

There are many booklets explaining what kind of facility this is. I duly read all the information. Brian is incredibly helpful in sorting through it with me. He had place his mother into such care several years ago. I am numb when we visited – seeing all the seriously ill patients. The Alzheimer’s floor was the most difficult. Brian’s stepfather had had this condition and he knows what to expect. Brian asked all the right questions for me. He knows the questions to ask having done this for his mother and stepfather.

When a person’s needs become more severe, or they do not want to remain at home a placement coordinator will help and be actively involved in admitting a client into a Long Term Care Home LTC. There are rules and regulations regarding access to LTC. The process begins with a home visit, if one has not yet occurred through previous access to services, an assessment of the client’s capacity. When a client can no longer secure adequate care at home, there is a decision to place the client and navigate them through the process of finding a Long Term Home Care placement. If they choose to stay at home, often-family members have no recourse, unless they are deemed incapable of making this decision. The case manger is in charge of this protocol.

The client, or designated advocate should the client be deemed unable to make this decision, can take advantage of a Long Term Home Care placement and begins to sign a series of papers, The case manager has permission forms such as permission for CCAC to gain access to information from the doctor, and a facility choice list, which is reviewed by the case manager. Sometimes, if client has dementia issues and behaviours that are beyond the ability of a Nursing Home, or extra nursing care, then they must move to a chronic care hospital. They are deemed ineligible for this more intense care if they can drive, or manage their own needs. Then they are advised to go to a Retirement Home. Files are shared with the Long Term Care Homes on their facility choice list, names will go on waiting list until bed is available: whether it be a private room, or not, or the type of accommodations they have requested on their facility choice list. The client must choose no more than three homes, based on location and physical requirements. We made this choice for my father based on proximity to our home.

As spaces become available that facility will contact the case manager, or the client. When bed offer comes you have a few days to accept the bed offer. It is pointed out that should a resident be admitted to the hospital the bed could be kept reserved for medical leave for 21 days. Otherwise they lose their bed placement and are discharged from the Long Term Care Home. If a resident requires a psychiatric assessment they may stay away for as long as 45 days, this is the only exception to the rule.

We traveled an hour to Orillia to rent a walker. Dad had been borrowing one. The government subsidizes it up to 85% - providing the patient is not in palliative care. What difference this makes I do not know. But the funding isn’t there if the patient isn’t going to last long enough to make the paperwork worthwhile, methinks. How bizarre. We do not care. We need to keep him safe and to allow him to move around. He is not happy with this, but we have rented it. We have to pay one month in advance. Now the trick is to get him to use it. He likes to put his shoes, newspaper and other things in the basket. It is a great item to have – I wished he’d been using one before but only “sick, old people” use them he tells me.