10 things you must know to care for a dying loved one

Caring for a dying loved one can be one of the hardest things you will ever do but can also be a wonderful, life-enriching and joyful experience. Preparation and education now will help you to find that joy in this difficult time. So, let me offer you some help to become equipped for this journey.

What to do first. In the midst of shock and numbness you need to make decisions. The first one is to choose a hospice. Now, you have caring professionals who can bring some guidance for the journey. Next, make sure you have all the necessary paperwork in place. This includes an Advanced Directive, Power of Medical Attorney, Power of Attorney, and a Will. Go over possible medical interventions with your hospice and include them in the Advanced Directive. Ensure that your loved one’s wishes are on paper so they know this time will be respectful of their wishes and ensure their dignity.

You will have help with the costs. Although the expense of further medical treatment might end there is still the need for nurses, doctors, health aids, medications etc. and that can be expensive. Here again is hospice to help. Hospice will not turn down anyone who is unable to pay or who does not have Medicare or Medicaid. They will cover all expenses related to the disease including medications, equipment, nursing assistance and home health aid.

You need to get organized. Think through the different areas of your home and your loved one’s needs and list them out. For example what do you need to prepare the bedroom, trash and laundry, meals and dishes, bathroom and hygiene, medications? Who will be helpers, can run errands, will make phone calls, will visit with your loved one? The more organized you are now the easier it will be day by day.

What your loved one will be feeling. Imagine hearing that you are going to die. What would you feel? What would concern you, frighten you or make you angry? What would you need to finish up and what are you about to lose? Now, realize that what you came up with is the tip of the iceberg of what your loved one may be feeling. If this were you what would you need to help you through this time? Patience, love, kindness, understanding, a listening ear, and a caring heart all come to mind.

Hands-on caregiving. Few of us know how to provide the depth of hands-on care that is needed for this time of life. There can be issues with meals, hygiene, medications, pain, skin problems, mobility and bathing to name just a few. The learning curve could be pretty steep here but hospice can provide you with direction and education and you will learn a lot as you go. Think through where you might be lacking and ask for instruction.

How to have a marriage, family and career right now. Caring for a dying loved one can consume your time, energy, emotions and thoughts and leave little for your family and work. This means you will have to be proactive about your relationships. This is only a season but you can determine whether this season builds or breaks down your marriage and family. Think long term and make sure you invest in others in your life too.

What you will be feeling. You may experience quite a roller coaster ride. Fear, grief, stress, joy, peace, anxiety, anger, helplessness, determination, fatigue and much, much more will all come and go throughout this journey. All of this is normal and you will get through it. You are stronger than you think. You have more resources than you know. Be present in this journey, feel what you feel, get help when you need to and know that you can become the best version of yourself because of this time.

What to expect near the end. Although not every person experiences the same physical changes as they die there are enough similarities that you can know when the end is getting closer. Changes include your loved one beginning to disconnect and turn inward socially. There are physical changes in appetite, bowels and bladder, sleep, and breathing. There are mental and sometimes spiritual changes and over time all these changes intensify until the end. It is hard to witness these changes but being aware means you can be better able to help and to offer love right to the end.

Planning for the funeral. Start now before your loved one has passed. Ask your loved one what they want in order to best honor and celebrate their life. After the death it is difficult to make decisions and it is more stressful too. You can lovingly plan the details now saving yourself a lot of added pressure and ensuring that you have more energy to care for yourself and others.

Grief and how to deal with it. First, know that this will take some time – it takes as long as it takes. In the midst of it your emotions can swing wildly. Grief has emotional, physical and mental changes. This is normal. Be gentle with yourself and others. Give yourself the time you need to work well through this. It won’t last forever and you will come back to yourself.

Knowledge is powerful and at this time you might be feeling helpless and out of control and need to get some power back. Knowing what to expect, knowing what to do and knowing how to do it brings the focus back where it should be – loving and serving your loved one to their very last breath – providing a peaceful passage.

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