Are you a dementia caregiver?
Do you find yourself raising your voice more often?
Are you feeling that you are in a rush and maybe rougher than you would like to be?
Or are you observing this behavior in your mom or dad as they care for their spouse?
It may very well be time for all of you to slow down and reassess the situation.
Research shows that individuals caring for their spouse coping with dementia experience a 40% chance of increased frailty during the care period. They also face a 90% chance of increased frailty after their spouse dies. Likely they are holding it all together until that moment and then they fall apart.
So, if your mom or dad is in this situation — it is important to pay attention to their needs too.
Caregiver stress can be devastating to the health of the individual doing the caregiving. They are focused on the one they love who is suffering and it is easy to neglect their own health. Your mom or dad may be giving and giving and giving until they are completely empty. You may find yourself in this position too. It is easy to get wrapped up in the giving and feel guilty if you take time for yourself. After all, it is not like the person suffering from dementia gets a break from the disease.
This is a challenging mind set to get past.
Caring for someone who is coping with dementia is not a short-term journey. It’s not like the flu or strep throat where they may need intense but short-term care. This is a marathon, not a sprint. And you want to be able to walk this journey with them. Taking care of yourself, therefore must be one of your priorities.
If you are feeling empty it is important to act. Even better is to put supports in place so you don’t get there in the first place.
You may find that your own mental health is being challenged. Are you struggling with anxiety or depression? Are you having trouble sleeping?
These are common problems. Build in a daily routine that can help relieve some of these stressors. Take a walk outside. Sunlight and fresh air can boost mental health. We know from the research that Vitamin D is so important for good brain function. Vitamin D is the sun vitamin, so get outside and get some sunshine.
Make sure you get sufficient physical exercise. This is where a daily walk can do wonders for your mood levels. Walking also boosts brain function, so make it part of your every day.
One suggestion is to focus on mindfulness while you walk. Park all your worries at the front door and don’t take them with you on your walk. Give yourself permission to focus on the sounds of the birds, the feel of the wind, the smell of the grass (or snow). Leave behind all the worries and stresses of your daily life and just be present in the moment of your walk. Observe nature and let go.
You may find your physical health is deteriorating. Maybe your high blood pressure medication needed to be increased or you hurt yourself doing some of the physical care of your spouse. Research shows that Alzheimer caregivers who are not able to express themselves suffer from high blood pressure. So it is important to be able to find a release for those emotions. You may need to speak about your experiences to someone, or write them down in a journal. You may find it helpful to join a support group. There are great groups online — like Memory People on Facebook — so consider joining one. Being able to talk about your frustrations and challenges is a great stress reliever.
Caregiving may also have an impact outside of the care-giver and care-receiver relationship. You may experience increased conflict among siblings, their spouses and in the parent-child relationships. Individuals may feel neglected or out of the loop because of the demands of caregiving. So, it is important to be able to speak about these feelings and have everyone participate in making a care plan.
A grandchild may volunteer to come for a visit so their grandma or grandpa can go for a walk. That may become their special time with their grandparent. Help them make that time special. They may bring some puzzles or activities to share. It may be a chance to look at photograph albums or cook a simple recipe together. It becomes a positive, life-affirming moment for everyone.
Caregiving is a normal experience. We are all going to deal with it in some way, shape, or form during our lifetime. How it is handled can have a significant impact on family relationships not only between your children but also your grandchildren. So, it is important to get it right.
Asking or hiring help to support you is not a failure to care. It is a recognition that you are human. We all want to do the best we can. Taking time for yourself so that you are not too empty to care is smart. Sometimes when you are so close to a situation, it can be difficult to make rationale decisions. Giving yourself a chance to step back and reflect is helpful.
You may want to use an assessment tool to keep track of how you are doing. You may feel overwhelmed but not know how to talk to your family about your own needs. The Caregiver Stress Assessment tool is a great way to form the framework for the discussion. You can find the Caregiver Stress Assessment inside the Enable Family Caregiver Program. Get it here.
Alternatively, you may find yourself an observer and not be sure about your mom or dad’s stress levels. You may be wondering about how to talk to them about coping. Encourage them to use the Caregiver Stress Assessment to set a baseline. Use it for discussion purposes and return to it monthly, as a way of checking in.
Being honest about emotional and physical needs will strengthen your relationships. Losing your mom or dad through caregiver burnout would be a double whammy. It is important to maintain both physical and emotional energy — putting the fuel you need into your “energy” tank to keep going. Keep your eye on that energy tank gauge so that no one runs out of gas.
Nicole has trained hundreds of professional and family caregivers who have touched the lives of thousands of individuals living with a cognitive impairment. Nicole also holds a law degree from Osgoode Hall Law School, a Master’s in Law from Queen’s University specializing in Negotiations and is a Certified Professional Consultant on Aging.