Undoing Aloneness: Caring for Caregivers

Many of us know someone–a friend, a colleague, a client or a customer– who is a caregiver. We might see their stress and worry and want to help, but feel uncomfortable and not know what to do or say. This month Elder Voice focuses on how we can care for the caregivers in our lives.

Psychologist Diana Fosha, the founder of AEDP,* uses the term “undoing aloneness,”  to describe a key principal in helping people. Simply, it means that what many people need most as they try to heal, go through difficult times, or face profound problems is a secure connection with others.  If we can allow ourselves to accept and begin to feel that supportive connection, or attachment, we begin to develop a sense of strength, peace, and safety at a very deep level.

Many caregivers describe caregiving as a lonely experience. As their loved one deteriorates, the caregiver is losing an important, central, and sometimes anchoring, person in their life. Moreover, they often become increasingly isolated and stressed as the needs of the person they are caring for multiply. Often, well meaning people such as friends, acquaintances or work colleagues keep a distance for some reason. All of these together can lead to what Fosha calls “unbearable aloneness,” which is painful, frightening, and sad. If it is not dealt with it can impact self image and self confidence and be one of the factors leading to burnout, depression and physical illness. It is why the best thing we can do for caregivers is to help undo aloneness.

Here are 12 tips on how to help:

1. Learn about caregiving. Go online and read about dementia for example and caregiver stress. This will help you to understand and imagine what it is like to be a caregiver.
2. Talk to the caregiver. The simplest and sometimes most helpful action is to just acknowledge to the caregiver that you know they are going through a hard time. You can say to them, ” I  heard about  —. I don’t know what to say,  but is there anything I can do?” or “I want you to know I am thinking about you,’ or  “if you need to talk, call me.”  Say it at a place and time when the person can feel that you are really there for them. Just that little reaching out tells the person they are not alone. Tell them if you have been a caregiver. Knowing that you have been in their position is a powerful connection.
3. Be empathic, not just sympathetic. Sympathy is ” I am sorry  that is happening to you.”  Empathy is recognizing and stating what it feels like: “That must be so frightening/painful/sad for you.”  Accurate empathy tells someone they are understood at a deep emotional level, and is also powerful in undoing aloneness.
4. Offer help. Maybe offer to drive somewhere, go along to a doctor’s office, or do some food shopping. Invite them to dinner. If the person they are caring for is suffering from dementia, you can let the caregiver know that you will understand if  there is some odd behaviour, you don’t want them to feel embarrassed, and you are not going to judge them or the one they are caring for.
5. Be supportively persistent. Most of us are very good at offering help but not so good at accepting it.  So be aware that if you offer, someone may say no.  You may want to tell them that you really mean it. You can tell them, ” I want you to tell me two ways I can help, and ‘there is nothing you can do’ is not one of your choices.”
6. Don’t ask, just tell. Tell them you are taking them for coffee, or you are driving them to the next appointment. Tell them to pick a night and you are bringing over a pizza. Find and go with them to a support group. Say to them, “we are getting together this week. When is good for you?”
7. Give them a gift certificate, good for two hours of caregiver relief. Or look at your schedule and decide what you are able to offer on a regular basis. For instance once every two weeks you will take their loved one for a walk.
8. Distract them and have fun. Caregivers often need a break from always being “on duty.”  A movie or a talk and a laugh for an hour or two may be the most “therapeutic”  thing you can do.
9. Put reminders on your calendar to check in with the caregiver on a regular basis just to say hello and ask how they are doing. If you find your are hearing from them less, be persistent in letting them know that you are there. Keep including them in your friendship group.
10. Develop a care team for and with the caregiver. Contact a number of people that you know the caregiver is connected to and set up a schedule where everyone is willing to do something. Use a website such as lotsahelpinghands.com to organize the team.
11. Help them find resources and information. Go to the organization which deals with the condition their loved one has to find out what they have available. Find literature on how long term care systems work in your area and about resources for caregivers.
12. Make your business or workplace more caregiver friendly. This may be around workplace flexibility such as hours or working from home. Train your staff to understand aging, memory loss, and caregivers. Remember the more you take caregiver needs into account, the more potential customers, clients, and satisfied workers you will have. Diamond Geriatrics provides seminars and training for business on these subjects.

Be aware that some people will not be able to accept your help and support no matter how gently or consistently you offer. It does not mean they do not want to, or that it is a rejection of you, it is that they cannot allow themselves to do so for some reason. At least you have tried and the attempt itself can help to undo the aloneness. Allow yourself to feel satisfaction in knowing that you made an important difference when another was in need.

In the end, the undoing of aloneness is not so much about what you do, it is about the relationship that you have with the person. The “doing together” builds the connection. You will know is working when you and they both feel a sense of connection and “we-ness.”

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*AEDP = Accelerated Emotional Dynamic Psychotherapy, a powerful  counselling approach,  effective for helping in many situations including dementia and caregiving.  Diamond Geriatrics provides professional counselling using AEDP and other techniques such as Cognitive Behavioural Therapy (CBT). If you feel it is time to make some changes in your life or in your relationship, call us today for an appointment.

12 Basic Things You Should Know About Caregiving

Many people do not understand what caregiving really entails. Here is a basic list of what you should know. It will help you to help the caregiver you know.

1. There is often not a lot of support available from the government.
2. What support there is can be hard to access and coordinate,  intimidating to use, and confusing in its complexity.
3. As an ill person deteriorates, caregiving can increase to be a 24/7 job. There are appointments to go to, daily care to provide, financial  issues to resolve, and more. The caregiver becomes a nurse, a pharmacist, a companion, a detective. A person with dementia may not be able to be left alone even a small amount of time without becoming highly anxious. They need constant reassurance as well as someone to structure everything they do.
4. Caregivers help with all personal care. This includes dressing, bathing, and  dealing with incontinence.
5. Caregiving can be expensive. If caregivers hire private help, it can cost a minimum of $25.00 per hour. A wheelchair can cost $5,000.00.
6. Seniors housing in the public sector is based on income and affordable to everyone. There are excellent publicly supported seniors housing options for care. In an emergency, housing can be found relatively quickly. The private sector can cost between $2,000 and $10,000 or more depending on location and services needed.
7. Caregivers often find that they are not believed when they describe what their loved one is doing; medical professionals especially may not acknowledge it if some tests are not backing it up.
8. Caregiving is unpredictable and a crisis can arise any time. It can disrupt plans, cause people to  take time off of work, or even quit work.  People describe it as a roller coaster that never stops.
9. Caregivers may do the caring out of love, but it still may be exhausting, frustrating, depressing, stressful and draining. They may feel guilty about decisions they have to make. They may face decisions where there is never a clear answer as to what is the right thing to do, so they may feel that they cannot win.
10. Caregiving can tear families apart  when different family members have different ideas about what a loved on needs or how to help. So even though a person may have a large family, don’t assume they do not feel alone.
11. If someone is a sole caregiver, e.g., a spouse with no children or an only child, caregiving is even more difficult because they have all the responsibility  and have to make all the decisions on their own.
12. People often really want help but are afraid that they will be a burden or that others do not really want to help.