When parents need care
Alittle over a year ago, we had to put my father in a home. It was a difficult but necessary step. Dad had a myriad of health issues, the greatest of which was what is called vascular dementia. Dad didn’t have enough oxygen flowing to his brain to allow him to think clearly. I loved the old Dad who enjoyed playing crib and could verbalize my name. But I loved the new child-like Dad too. He was on the dementia ward at Escasoni. He, and all the other residents on the ward, wore a white bracelet that looked suspiciously like a watch with no face. The WanderGuard could activate an alarm if Dad tried to make a break for it. During my visits to the dementia ward, I would offer my hand and Dad would take it and then we would stroll the hall together. Dad wasn’t talking much at this point but I could still understand him. Even after he became almost completely non-verbal, Dad could still get his point across. After it became too painful for him to walk, I would know immediately if he was OK with me pushing him outside in the wheelchair. And I had no trouble understanding when he wasn’t ready to go back inside. He liked the expertly manicured garden behind Escasoni with its colourful flowers, raised vegetables and sheltering fence. He liked to feel the sun shining on his face. One of my last memories of Dad is me pushing him in his wheelchair behind Escasoni on an unseasonably warm fall day. Dad died in October, four months after he entered the home. This column is for those of you who may find yourselves in the similar heart-wrenching situation in which we found ourselves last year. What happens when one of your parents becomes physically or mentally incompetent and you and your family are no longer capable of caring for her/her? So here’s a scenario. Your father (or mother) is widowed and still living in the family home. After several years on his own, he begins showing signs of dementia or Alzheimer’s, you don’t know which. He begins stockpiling food, leaving the stove on long after the kettle has boiled. Physically he’s getting weaker until finally he takes a spill and ends up in hospital. You’re thrilled to learn that he hasn’t broken a bone. But wait there’s more. The doctor tells you he’s riddled with cancer and his mind is far worse than you thought. You are the only child still living in the city. You have one sibling in Corner Brook and the rest on the mainland. You have four children of your own and cannot cope with taking your father in your already crowded home. You have just entered the Twilight Zone of parenting your parents.
Here is what I would recommend, although my plan may differ from that of the professionals.
Preparation
While your father is in hospital, make an appointment to speak to a social worker. Remember to do this while he is still admitted. Things seem to flow more smoothly if he’s a patient and not in your care. If you have documentation (i.e. diary entries) showing the progression of his illness, it is helpful to have these on hand. The social worker will ask you to fill out forms and then set up appointments with other professionals like occupational therapists etc. (Note: A patient can be medically discharged from a hospital but remain there at his own expense while waiting for a bed in a long-term care facility.)
Next start rounding up and copying your father’s birth certificate, MCP card, a couple of years’ worth of monthly bank statements, last income tax statement and all prescription medications. Make a bunch of copies of all these documents because several people will ask you for them. These will be used to determine how much board he will pay if admitted to a care home. Usually, if you have to make a major purchase such as a specialized wheelchair, the time to do this is now.
The next thing you have to do is an important one: you must establish whether he has appointed a Power of Attorney (PA) which is a legal document that a lawyer files. The first place to find out this information will be asking your father. If he doesn’t know, then hopefully he has a will and the PA documents will be filed with it if they exist. If there is not a PA in place, it’s time to see a lawyer and start the process. That way financial decisions regarding your father can be deferred to you or whomever is appointed attorney. (Note: the person is your father’s attorney, not power of attorney. This gets confusing because we tend to think of an attorney as a lawyer)
Without a PA in place, you have no right to clean out and distribute possessions in the family home; no right to list or sell the house; no right to deal with financial matters of any kind unless arrangements have been made with individual banks. One important note: once he passes on, you are no longer his attorney. This designation exists only while he is living. At this point you can also check for an Advance Health Care Directive (AHCD), which is a written statement outlining a person’s health care wishes in the event he can no longer communicate them himself. If there is not one already in place, the social worker will help you establish one to be kept on your father’s file. Note: everyone should have an AHCD in place while they’re still cognitively well — before the need exists. Eastern Health has information on their website regarding AHCD. (http://tinyurl.com/AHCD-NL).
Your father, if capable, will have to appoint a substitute decisionmaker (SDM) to make health care decisions on his behalf. This is official provincial government legislation. If it’s not possible for your father then you and your siblings will have to have a doctor examine him to determine if he is mentally unfit. If he is unfit, an SDM can then be appointed. With this in place you can also make decisions regarding medications and level of care. (Note: the SDM does not have to be the Next of Kin or First Contact.)
Be prepared to round up signatures by fax from your siblings who live away. If they visit home, check with your lawyer and social worker to see if there are any documents they can sign while in town.
Living arrangements
If you know you cannot care for your father, you can get him on a waiting list for a bed in a care home. You cannot necessarily choose in which home you would like him to be placed, unless of course you decide to go with a private home.
If the stars are aligned, hopefully a bed will be waiting for him as soon as he is discharged from hospital. Don’t count on this, however. When you arrive at the home with your father for the first time, you will meet with an intake social worker, a wonderful caring person who will feel like your best friend. Don’t get too attached to the social worker, though. It’s possible you may never see this person again. In my experience, social workers move around, or yours may not work full-time in the home where you are.
Upon entering the home, your father should have at least five changes of wash-and-wear clothing, which the home will have labelled. You can put up pictures to decorate your father’s space and also provide a TV, but be sure to check with the home as to its rules concerning dimensions etc. A chair will only be allowed if there is enough space for staff and residents to safely navigate around it. Personal care items like shampoo, deodorant, razors, toothpaste and hearing aid batteries can be purchased using your father’s resident care account.
Remember that all medications your father takes will be provided by staff so if you have two weeks’ worth at home, you cannot bring these to the home for them to administer. The home will purchase the drugs directly from a drugstore. If the prescriptions are not covered by a drug plan, then you have to make arrangements to pay. The home can set up a resident trust account where you can deposit money and they will use it to pay for these prescriptions or things like haircuts.
The next thing to do is introduce yourself to the resident care manager (RCM) at the home, the person responsible for all the happenings on the wing where your father will be living. At this point I would ask the RCM to explain who’s who in the sea of indistinguishable green, red or teddy-bear plastered scrubs on your father’s ward. Like the social worker, all these people are exceptional at what they do and deserve to be sainted, but it’ll make things easier if you understand who’s who and what powers and duties they have. If you ever have concerns regarding the care your father is receiving, the resident care manager is the person you should contact. You can also inform the RCM as to who will be the point of contact for your father. It doesn’t have to be you. It could be anyone you designate as long as they are agreeable to receiving calls from the home and sharing that information with other relevant people. The point of contact is not the attorney and any questions regarding monetary transactions, for example, will still have to go through the attorney.
Who is who and what they do:
You are supposed to be able to differentiate between the various designations by their IDs or the colour of their lanyards. This is not easy, especially considering not everyone always wears the lanyard and the ID tag is often not visible at the end.
Registered Nurses (RN) have a four-year university degree and can specialize in areas like community health, occupational health, emergency, rehabilitation or oncology, to name a few. Nurse Practitioners (NP) have more training than registered nurses (some have master’s degrees) and can thus perform more duties than an RN. They may be able to complete physicals, diagnose patients, prescribe medicine and refer patients for testing like ultrasound, X-rays or lab tests. In an era when there is a shortage of family doctors, nurse practitioners are a godsend. If you have a question regarding your father’s meds, for example, best ask the nurse practitioner on duty. Don’t be shy, just head to the nursing station and ask who the nurse practitioner is that day. (Note: Not all long term care facilities have NPs.) Licensed Practical Nurses (LPN) on the other hand, have less training than RNs (they have a certificate/diploma instead of degree). You can think of them as entry level nurses, not that their services are any less important than those of their superiors.
Scrambled into the mix of RN’s, NP’s and LPN’s are Personal Care Attendants (PCA). These are the people who will help your father get out of bed, get dressed, shaved and fed. They are lovely people who are extremely busy, especially in the morning. It’s probably best to save your visit until lunch time or later to allow the staff to do their jobs unencumbered.
After three months or so in the home, your father should be more or less settled. That’s the time to put in a request with a social worker for a meeting with all relevant staff who have contact with your father. These staff members should include physiotherapist, occupational therapist, dietician, recreational therapist, nurse practitioner, registered nurses and the doctor in charge of the wing. This is your chance to ask any questions or voice any concerns. For example, if your father needs to be escorted to an outside appointment, and you are unable to do it, you can request assistance from one of the staff. Although, keep in mind, the wing will then be short one staff member so if you can accompany your father, please do. If he is wheelchair bound, the nursing station can order Paratransit services for you and your father and the money will be docked from your father’s account.
Finally, nursing stations usually have phone numbers for each denomination in case you wish to request a visit from clergy. You can call your parish on your own, of course, but in stressful situations, you may ask a nurse to make it for you.
Hopefully you will never need this information, but if you do, I wish you as caring staff as Dad encountered on his final journey.