Contributed by Ranae Kranz
You’ve been caring for your mom or dad for months now. It hasn’t always been easy. You’ve had arguments and felt frustrated, but you still have times when you laugh together about a memory from childhood that brightens their eyes again.
As their dementia progresses, you miss how things used to be. You miss their personality, their wisdom, their friendship. You miss them.
The stress of acting as their caregiver can build surprisingly fast. One minute you think you’re doing ok. The next minute you feel guilty for wanting life to go back to normal – when you had time for hobbies, friends, work and a normal family life. And just when you think you’re getting the hang of things, you feel anger and frustration bubbling up as your parent needs you for even more tasks. Simple things become big things. Everything feels complicated and takes so much time.
It’s a big undertaking to care for your parent with dementia. Some days good moments outweigh challenging ones. Your parent has a moment of clarity that fills you with joy for hours, but their dependence on you increases your stress as the disease progresses. You may feel unsure about where to turn next or how to handle a difficult situation.
Whether your parent is living with you or you’re helping them in their home, you’ve probably been witnessing the changes in them daily. Below are some of the common cognitive signs of dementia:
- Losing things and not being able to retrace steps
- Difficulty communicating, problem-solving and planning
- Memory deficits that disrupt daily life
- Poor judgement
- Confusion and disorientation
- Difficulty completing regular tasks
- Repetitive speech or actions
- Wandering
- Difficulty with motor skills
These changes are challenging, but the psychological changes can push you to your limits. You’ve borne the weight of the personality changes, withdrawal from social activities, agitation, depression, anxiety, inappropriate behavior and paranoia. At times, the stress leaves you teetering on the edge.
Please know, you are not alone. What you feel and how you react to those feelings are normal human emotions and reactions. Many other adult children have felt the same things as they navigate the minefield of caring for a parent with dementia. You have the right to feel the way you do; you’re in the midst of a challenging journey.
Again, you are not alone. And there is help.
Caregiver burnout signs
If you find yourself arguing once again with your parent or losing patience too often, you may be burning out. This happens to many adult-child caregivers. You may also feel like you’re trying with everything you have and still feel like you’re failing them. Do you see any of these signs in yourself?
- Social withdrawal – Have you lost touch with your friends or don’t take part in activities you used to enjoy?
- Anxiety – Are you worried you won’t be able to provide the care needed as the disease progresses? Or anxious about taking care of both your family and your parent
- Depression – Do you wake up in the morning thinking you can’t face another day? Or feel like your spirit is broken by the weight of your responsibilities?
- Exhaustion – Are you so tired you find it nearly impossible to complete tasks you need to complete?
- Sleeplessness – Do you lay awake at night worried about how you’re going to keep going? Or worried about the toll dementia is taking on your parent?
- Anger – Do you get angry when your parent can’t do the things they used to be able to do? Or get angry at yourself for failing to notice an obvious problem?
- Lack of concentration – Have you been forgetting appointments or your child’s activities? Or find you can’t focus on the task at hand?
- Irritability – Are you moody and find yourself lashing out at others for the smallest things?
- Health problems – All of these things take a toll on your physical health. Do you remember the last time you felt good physically?
- Denial – Do you deny your parent’s disease is permanent? Or deny you are struggling with their care?
If you see one or more of these signs in yourself, it’s time to get some tools to help you cope with the great but difficult work you’re doing for your parent. They need you to be at your best as often as possible and so does your family.
Coping tips for adult-child caregivers
You’ve been doing your best taking care of your mom or dad. As you’ve done that, your own emotional, mental and physical health may be suffering. It’s a natural side effect if you aren’t proactive about caring for yourself.
Many tools and methods can help you cope with the stresses of caring for your parent. See if any of these coping tips are doable in your situation.
Knowledge tips:
- Know the doctors – Build a relationship with your parent’s doctors and medical staff. They can provide support and information.
- Know the facts – Learn about dementia and its effects so you are prepared and can react in a more constructive way.
Physical care tips:
- Get help – Ask a trusted friend or family member for help in making sure you take care of yourself.
- Exercise – Take time to exercise, even if it’s only for a few minutes at a time.
- Sleep – Get plenty of rest to recharge physically and emotionally.
- Feed your body – Eat a balanced diet but enjoy a treat here and there.
- Relax – Try relaxation techniques such as meditation, yoga, breathing techniques or repetitive prayer.
Emotional care tips:
- Give love – Speak with love and understanding to your mom or dad rather than anger or frustration. Using a low, calm voice can really help diffuse a bad situation.
- Take a moment – When a difficult moment arises, take a few deep breaths before reacting. If you need to, leave the room for a couple minutes to regroup.
- Talk it out – Find someone you can talk to about your feelings of frustration and loneliness.
- Feed your soul – If you are religious or spiritual, make time for prayer, church or other spiritual activities.
- Be grateful – Remember that this time is precious with them. Try to bring joy to them at as many moments as possible. It will bring you joy, too.
Action care tips:
- Create structure – Plan activities you can do with your parent to help them feel useful and fulfilled.
- Get out of the house – Take time to get out to visit friends, do some shopping or have a night out. If you feel like you can’t leave your parent alone or with someone else, it may be time to consider some additional care options.
- Nurture creativity – Resurrect a hobby you love and find a way to involve your parent in the activity. Maybe you can read to them or show them a picture you drew.
The best tip:
- Write it all down – Keep a journal as you travel this road with your loved one. Write about memories, good times and the things you’re grateful for. Also use the journal to create structure in your days by noting what works, what doesn’t and how the disease is progressing. This can give you greater control over situations and provide important information for the doctor. Use a different color pen for recording the great stuff so you can go back and revisit those times when you need a boost.
You don’t have to use all these tools. Use what you feel would lead you to a more peaceful and joyful life taking care of your parent. Put yourself in the best position you can so you can enjoy the time you have with them.
And know that they would be proud of the way you’re caring for them. They still love you, even if they have a hard time showing it. Love them right back.
If you have any other questions about how to best support your spouse on their journey or want to learn more about our memory care services, visit www.primroseretirement.com. We’re here to help in any way you need us.
