As The Primary Caregiver, Should I Journal My Feelings About Dementia?

Being a caregiver can be stressful and difficult. It involves contradictory feelings, thoughts and frustrations. When you have to care for a loved one who has dementia, you have to be patient, talk with a calm voice and never talk down to your loved one.

Journaling your thoughts and feelings will definitely help you cope with the situation. Write in your journal all that comes through your mind and heart; nobody but you will read it. It is between you and your journal. Let your pen guide you through the pages. You may want to do some additional research on dementia to better understand the process and stages your loved one will pass through. If you are a little bit knowledgeable about the disease, the process of caring will be easier on both you and your loved one.

You can keep daily notes on your loved one, such as bathing or eating changes, whether she becomes agitated, and so on. It can also help you remember things to discuss with the doctor.

The good thing about a journal is that it is handy and you can write whenever you feel like it, day or night. It will never contradict you. On the contrary, it will help you deal with your internal emotions. It will relieve your mind and your soul. If you are uncomfortable about writing, it may be easier to express your feelings by recording them on a tape recorder or the dictaphone on your phone.

If you like, you can recall some family gathering you all had together, a camping trip or fishing trip where your loved one caught a BIGGGGG fish! You can read this part to him or her, and it might trigger some memory in your loved one’s memory that was lost to dementia.

Journaling will also help you release the burden of caregiving you may have. Removing the burden through the pen will definitely ease the pain. But journaling should not be the only way out for these strong feelings you have. You may want to enroll in a support group. You can check through the Dementia/Alzheimer’s Association if there is such a group in your area. Speaking to other people will help in getting all these negative emotions out. And most of the participants are dealing with exactly the same emotions because they have to care for a loved one who has dementia as well. Sometimes, speaking out loud and getting out these feelings will do you a lot of good and you will feel much better after. You may even make friends through these groups, friends that will be able to support you as time goes on.

Remember, you are not alone. You have friends and family to talk to. Maybe you can ask a family member to help with your loved one. It will ease the burden and give you more time to yourself, to journal and to recharge your batteries.

caregiving dementia journal caregiver

Caring for Elderly Parents: 4 Tips for Avoiding Caregiver Burnout

Bianca’s mother, Angela, had rheumatoid arthritis for years. Suddenly and unexpectedly, Angela was disabled by the pain, fatigue, and limited mobility that she had feared since her diagnosis.  

Bianca convinced her fiercely independent mother that living alone was no longer an option.  And Bianca, the eldest of four children, knew that caring for her sick mother fell on her shoulders. Bianca was a legend in the circles of her family, friends and colleagues for her ability to act with grace under pressure.

Bianca took two weeks of vacation from her job and cooked and froze meals for her husband and three children. As she drove to her hometown, she wondered how she would coordinate her mother’s care from a distance. Supporting her husband as he built his new business, nurturing her kids and directing a major project at work already made her feel that she was running on empty.  

You may relate to Bianca’s story. One out of four people cares for a friend or relative who is sick, disabled or frail. That’s a lot of people who offer unpaid help to a loved one.  If they were paid caregivers compensation would exceed last year’s Medicare budget! And if you become a caregiver, you, like Bianca, may try to do it alone, shrouded in secrecy. 

Solo caregiving compromises your ability to nurture yourself and others. Let’s take caregiving out from behind closed doors.  For your sake and the sake of those who count on you, please get some help. Caregivers are competent people who feel that they should be able to do this job. Yet, many soon find themselves unprepared and ill-equipped to manage the sometimes daunting tasks, such as managing a complex medical regimen or remodelling a house so it’s wheel-chair accessible or even finding someone to stay with their loved ones so they can go out to a movie without worrying their relatives will fall on the way to the fridge.

If you are a caregiver, you know that this act of love has its costs. You stand to forfeit up to €600.000 in lost wages and pension. Add to that is the personal cost to your well being, as your new demands leave you less time for your family and friends. You may give up vacations, hobbies and social activities. Finally, caregiving places a burden on your health.  Caregivers are at increased risk for depression, anxiety, depressed immune function and even hospitalization.

Instead of reaching out, caregivers become isolated. Many who assume the caregiving burden fit the profile of the giving family member, like Joanne, who does not want to trouble others with their problems.  Some fear the consequences of disclosing their new demands to coworkers or employers. Caregivers are further challenged by the cultural conspiracy of silence.  Our youth-centred society turns a blind eye to the unpleasant and inevitable reality that all of us age and die. This leaves both caregivers and care recipients unprepared. So planning is necessary.

What can you do?  Start talking about the “what ifs” and make a plan.  Here are some tips to prevent a burnout while caregiving:

1. Start with yourself

What will happen to you and your family if you become disabled or die unexpectedly? Do you have disability insurance? Do you have a will? Do you have a living will and have you identified the person who will make the medical choices you would make if you are not in the position to do so?  

2. Look into community resources that support caregiving 

A day program, for example, helps your loved one by providing social connections with peers. Your community may even offer transportation to and from the program. Getting out of the house offers the additional benefit of getting bodies moving. Socializing and exercise are the two most powerful interventions that help your loved ones stay at their best.  

3. Make specific suggestions to friends, family members and neighbours who want to help

You may even want to keep a “help list.” When they say, “Let me know what I can do,” you have a response:  “Could you take mum to her physical therapy appointment this week?”  “When you’re at the store, could you pick up some oranges and blueberries?”  “Could you watch the kids for an hour so I can get to the gym?” Your giving friends will appreciate specific ideas about how they can help.

4. Take care of your health

Get good nutrition, plenty of sleep, and regular exercise to stay in top health. Wash your hands regularly to prevent colds and flu. Manage your stress with laughter, a prayer or even a deep breath. Nourish your soul with a taste of activities that recharge your batteries such as writing in your journal or gardening. Finally, talk to your doctor if you feel depressed or anxious.   

The best strategies for effective caregiving include preparation, acts of self-care, and reaching out for help. That begins with the courage to start talking openly about caregiving.