Caring for Loved Ones at Home

An Illustrated, Easy-to-Follow Guide to Short or Long-term Care 4th Edition.

9. Caring from a Distance

In the Home Care Examples at the beginning of the book, you can read about Julie caring for her mother Sara from across the country. There are very practical things you can do to help from a distance. Much of what you do depends on whether there are family and friends nearby who can help your loved one when you cannot.

When There are Local Family and Friends to Help

Most of this section assumes that you are the main caregiver who is coordinating care, as best as possible, from a distance. However, if there are local family members and friends able to provide care and coordination, your role might be quite different.

The person farthest away often feels quite isolated from the day-to-day activities around their loved one's care. At the same time, the ones close by are often overwhelmed with juggling care of the loved one with all of their other commitments (e.g., to their own growing family, to their work and community commitments). In such situations there is less time for ongoing communication and that can lead to friction.

Having been on both sides of this equation, I know how important it is that everyone recognizes the stresses of the other person as best they can. With you being far from your loved one, your contribution can be making regular phone calls or communication through e-mail, letters, flowers, and cards. As well, you can provide encouragement and support to those providing the day-to-day care. They need to know that you are thinking of them and not just leaving them to do all of the thinking and support.

Your ability to listen to their stories of joy and frustration can be very helpful. As well, since you are farther away you are likely working or, at least, not loosing part of your funds in providing day-to-day support. You could offer those providing care some extra money to allow them some much needed respite care (e.g., a weekly massage, a weekend away from home which would require some paid nursing care perhaps).

At the same time, your long distance suggestions cannot be based solely on what you would do if you were there because you are not. The people there need to be allowed to do the best they can given their circumstances. You might wish that someone was there more often, or helped more with meal preparation, etc. You cannot 'coach' from a distance without creating a great deal of tension.

The people providing care also know that their loved one often 'lights up' when you call. That is only natural as you are far away and, therefore, your call is special. However, it is important to recognize that your family members and friends providing the care also need your 'special' calls of encouragement and support.

At a distance you can volunteer to do some of the telephoning of others farther away so that those providing the day-to-day care do not have to do all the phoning. You can also help with 'paperwork' chores like some of the legal, financial, and if needed, funeral preparations. You can help by getting the basic information that those close by need to make decisions.

There may also be a need to do some library or Internet research about your loved one's condition and treatment that those near by cannot find the time to do. Do not overwhelm them with information but rather provide them with some concise information they can use in talking to the decision makers about next steps. This can be an invaluable gift you provide your loved ones and those caring for them.

For those close by, especially in situations where a loved one's health is at great risk, please understand that everyone far away listens to each telephone ring as the one that leads to a call with bad news 'from home'. Recognize that being far away is isolating and lonely. Circumstances prevent those far away from being at the loved one's bedside and that is hard.

This mutual understanding is what makes it possible to be supportive from far away. Talk as often as possible and exchange thoughts and feelings to be supportive of each other and, therefore, supportive of the person requiring the home care.

When There are No Local Family or Friends to Help

When there are no family members or friends nearby to provide support, you must look at other alternatives. Depending on your loved one's needs and financial circumstances, you may need to ensure they stay in hospital or a rehabilitation centre a bit longer, if possible, as there will not be enough home supports. Even with home care services provided through government and private organizations, there may be several days where it would be unsafe to go home. This is where assertive advocacy may be necessary. You will need to have the telephone numbers of the decision makers in the hospital or centre to ensure that you can get to them before your loved one is discharged.

Once at home, and depending on your loved one's need for help, a daily check-in call by you or a visit by a paid professional/volunteer may be the least that needs to be done to ensure your loved one's safety and that they know they are not alone as they recover from surgery or illness.

If you have time to prepare in advance, you can check with the local home care services offered by the government or for-profit organizations. Some of the services offered are described in the section later in the book, Finding Out about Local Home and Health Care Programs. If you do not have time before a medical emergency to arrange that, you will need to contact the hospital or rehabilitation centre's discharge planner even sooner to help ensure the person is seen everyday once they return home.

It is easy to say you should plan for these situations in advance. However, that is difficult to do given all the demands on your time. If you are reading this book because of a medical emergency, concentrate on the short-term things that need to get done. Use this opportunity to learn what you can do about longer range planning after this event is over.

Note: The following information assumes you cannot be with your loved one quickly. If you were able to be with them, the rest of this book is the information you will need.

Short-Term Situations

Short-term situations are often about 'crisis management' and so you will be tired and frustrated that you cannot do more or that you cannot get everything for your loved one when they need it. It is not comforting to know that this situation may be a bit like 'just getting through it is okay' but that might be the best that is possible for now. Once you have a bit more time and more information upon which to make decisions with your loved one, it will all feel more comfortable and do-able.

Your greatest opportunity in the short term is to act as an assertive advocate for your loved one. Firmly and fairly talk to the decision makers about what has happened, what needs to happen next and what must be in place before the person goes home. Use some of the other sections of this book to help you ask the right questions of the right people.

Next, you need to ensure that your loved one has access to a telephone, if they are able to speak. You want to be in contact as much as you can given their circumstance and your own.

If they need to stay at the hospital or rehabilitation centre for more than a few days, see if there are any volunteers, social workers, or pastoral care workers who can come and spend some time with your loved one and who can contact you with any news, questions or concerns. Telephone and e-mail are both excellent tools to keep in touch with busy people.

If the short-term situation will take a matter of days, see if you can get time away from work and/or home commitments to concentrate on getting what is needed for your loved one. If you can actually go and visit them during this situation, that would be great. Given that is not possible in many situations, you will need to ask for the help of your own family and friends nearby to ensure you have the time and information you need to be as helpful as possible to your loved one. Telephone calling and e-mails have inevitable frustrating aspects to them. You will not always get to the right person at the right time which means you need extra time to make those contacts.

Long-Term Situations

When you have more time to plan, you gain a sense of comfort and control when you plan in advance. This planning may be necessary because your loved one is going in for surgery in a few months or because they need ongoing, long-term help because of disability or aging.

Although it is said elsewhere in this book, you need to take care of yourself in long-term care situations, even when you are far away. It is too easy to get caught up in the telephone calls, e-mails and research. You need to include those who love you who live with you and nearby. You need physical, emotional, spiritual and information supports as much as your loved one. Ensure that you get it. Care giving is mutual and you need to ask for help before your own health is hurt.

Whatever time you have to prepare, here are some tips to help you gain as much control over the situation as possible:

Later in this book is a chapter on Creating Your Own Support Team. It is full of information that can help you and your loved one feel a sense of control over future events. Creating a support team may require you to visit your loved one and use some of that time to plan together whom to ask to be part of such a team. Neighbours can be wonderfully helpful when asked to do specific things. Colleagues from your loved one's work, members of their spiritual community, and members from any organizations or community groups they belong to can be a rich source of participants in such a team. Your first goal is to find someone who will act as a coordinator of a team and the person who will keep in touch with you most often.

Do not underestimate how many people may be willing to help. The key is knowing how to ask. For example, which of the following requests for help from a neighbour would you be most likely to accept:

"My Mom is pretty sick. Can you help us?" versus "My Mom is pretty sick. We were wondering if you might be able to help by cooking a casserole for her once every two weeks or picking up her medications at the pharmacy every three weeks or so? Would you be able to do one of those two things for us?"

The chapter on creating a support team should help.

Whether your loved one is a member of a specific faith community or not, such a community can be wonderfully helpful. The hospital pastoral care department or the faith community closest to your loved one's home are two excellent places to start. There is a growing movement to encourage faith communities to go back to their caregiving roots and your loved one can help them achieve just that. Be diligent in finding the right group for your loved one.

Check out local libraries, newspapers and voluntary organizations to see what the local community already offers that might help your loved one. Some of this can be done by Internet and telephone. Perhaps there is a seniors' centre, a volunteer group, or a spiritual community that are already in place and ready to help. Your loved one may also be part of a close-knit group (e.g., art guild, bridge club) whose members would enjoy helping out.

You will also need to get some paperwork in order. Some of this can be done during a visit with your loved one while some can be done from a distance. For example, your loved one should have Powers of Attorney for personal care and another for financial decisions. You may be their power of attorney for both as the loved one accepting responsibility for their care. You need to ensure that the family physician, specialists and hospital have that power of attorney on record. See the section on Powers of Attorney later in this book.

You will need to make a contact list of the family physician, specialists, lawyer, accountant, funeral home directors and others and contact them by phone or letter to let them know you will be coordinating care when your loved one is no longer able to do that for themselves.

You will need to know where documents are kept and get them up-to-date (Powers of Attorney, Last Will and Testament, marriage license, military papers, bank statements, other legal, financial, investment, and funeral pre-planning documents.)

Record all important information: social insurance numbers, health numbers, insurance policies, driver's licenses, credit cards, pre-planned funeral and internment information, passports, medications, emergency contact numbers (family physician, specialists, hospital, ambulance) as well as contact information for local friends of your loved one who can be called for help, if necessary.

You will need to have information on all the utilities and other regular bills that come into the house in case you need to take over the handling of these bills.

You will want a copy of the home key. If your loved one agrees, you may also find it helpful to have copies of other important keys (e.g., car, cottage, safety deposit boxes) or know where they are kept.

It might help to have contact information for local basic home repair companies to respond to any emergency repairs (e.g., flooding toilet or basement drain, a broken furnace).

You will need to let your family and employer know that you may be called away suddenly to care for a loved one for a while.

Your work needs to ordered in such a way that someone can fill in for you without too much inconvenience for them or your employer. For example, if you are in an administrative role at work, you might have a binder filled with what you do, how you process things and get the work done. Someone who fills in for you during vacations or medical emergencies would be very pleased to have that.

There may be a time when you need to go to your loved one to handle their transition from hospital or rehabilitation centre back home. Again, knowing this is possible allows you to prepare for it. If it is not a complete surprise to family, friends and your work, then it is more likely you will get the support you need.

Check with your employer to see if they have any compassionate leave policies that would allow you to take time from work to care for your loved one. In the extreme case of your loved one dying, your employer or government may have a leave through their unemployment insurance plan to help cover some of your income loss during this time. Checking in advance about such policies can ease your mind a bit.

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Caring for Loved Ones at Home

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Copyright © 1996, 1999, 2002, 2006 Harry van Bommel

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