Alzheimer’s disease is often referred to by family members and caregivers as “the long goodbye.” Although progressive, those diagnosed with Alzheimer’s disease can live from 2 – 20 years with the disease slowly eroding their ability to remember, make decisions and perform daily tasks.
If you are a providing assistance to someone with memory loss whether it is daily hands on care or that of a long-distance caregiver it is important that you take care of yourself too. Below are a few items to keep in mind:
Care for Yourself First – If you’ve ever listened to the stewardess on an airplane you know that if the oxygen masks are deployed you should put the mask on yourself and then help those around you. This is the same direction a caregiver should take. Care for self first! Take time out of every day for yourself otherwise you are running the risk of caregiver burnout. Also just as you would not let your loved one miss a Doctor appointment, don’t put yours off and while you are there, make sure your medical professional is aware of your caregiving situation. Perhaps they will better understand why your blood pressure is high or help you to strategize ways to deal with stress and anxiety.
Take Offers of Help – Who hasn’t been told “If there’s anything I can do…” and then never followed-up on the offer. Caring for someone with Alzheimer’s disease usually is a fulltime job. Therefore it is easy to feel like you are alone in the fight. However, if we open ourselves up to asking for and accepting help odds are it will allow us provide better care for a longer period of time for our loved one. Make a list of things that you would feel comfortable delegating, errands that need running or activities that your loved one enjoys. That way the next time someone offers you help, you’ll have something that they can “do.”
Seek Support – As a caregiver it is important that everyone immediately connected to your loved one be on the same page and when possible united in their love and compassion. However, realize that it is common that everyone will not be in agreement all of the time. When this happens try to find common ground and when needed ask for assistance from a third party. Remember your relationship with those that assist you in caring for your loved one, especially if they are family or friends, if tended well will likely outlive your loved one.
Find Local Resources – It is very important that upon diagnosis you begin to seek out services within your community that can assist you throughout your caregiving process. You may not need Respite Care right now, but you also don’t want to be scrambling to find out what is out there when you do. Luckily a great place to find out about resources in our community is through our local Aging and Disability Resource Center and Alzheimer’s Association.
Be Real – As a caregiver it is key that you have a good understanding of your loved one’s diagnosis. If not, you truly set yourself and your loved one up for frustration and failure. As the disease impairs more of your loved one’s memory and decision making process your expectations need to change. For example if your loved one can no longer tie his shoes it is not because he is being lazy, it is because the disease is no longer allowing him to remember how to tie his shoes.
In addition, be realistic with yourself and what you can expect from others. You will not be able to be with your loved one every second of every day and you may get frustrated at times. That’s OK. You are not abandoning them nor are you a bad person for needing time alone. Remember even Mother Theresa got frustrated. If you are a long-distance caregiver you will probably not be able to see your loved one as often as you or their immediate caregiver would like. However, perhaps there are other ways that you can help such as scheduling doctor appointments or making healthy meals that can be easily heated and eaten.
Make a Plan – Due to the fact that Alzheimer’s disease is progressive your loved one will never recover those things that they have lost. Realizing this is one of the hardest parts of coping with the disease, but the most important. By making a plan of what you need and want to do for your loved one helps to keep everyone one the same page. It is important to identify the people who will provide care and where your loved one will live. You should also identify who the ultimate decision maker will be, usually this is the Power of Attorney, and when they will take over making these decisions.
As a caregiver if you take the necessary steps listed above you can make sure that your loved one’s days are filled with compassionate care. Regardless of the length of the journey your love will last far beyond their final goodbye.