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Dad Diaries: Finding wisdom for life in a free hospital booklet

You never know what helpful nugget you may find in hospital educational information. Usually, I comb available materials for practical ideas and medical insights. But, while waiting for my dad’s rehab session to begin, I picked up a booklet, “What to Expect: Recovering from Stroke” and it contained the most profound statement.

“We may feel an intense sadness because our loved one has suffered a brain injury, has lost mobility, and possibly may never achieve normal life functioning due to stroke. This sadness comes from wanting the miracle of a normal life.

Whoa! There it was. The most obvious of “aha” insights in a little booklet in a far off corner of the nursing unit where patient education materials are housed.

This idea — the miracle of a normal life — is much of the reason why family of the patient grieve, avoid the hospital and stay in denial that life has changed because of this medical emergency. The patient’s “normal life” has changed, which means our “normal life” has changed. And, there is no type of change as impactful as the kind that comes from illness or injury.

I knew, deep down, that this day would come. The day when my father would experience aging, or illness, in a way that might affect his life and lifestyle. But, it was still a shock.

I’ve had the experience of knowing how to adjust to the “new normal” during my first husband’s prolonged illness. Those first few months were a continual adjustment to each realization that some things would get better and other things would get worse.

Of course, it’s different when it’s a parent versus a spouse, but some of the ways that I’m dealing this time are tried and true. Here are just four pearls that have proven helpful this time around.

1. Be present as much as possible. Yes, this one can be very tough for a lot of people. But, it is as important to the welfare and quality of care your loved one receives as it is for your peace of mind to be present and available at the hospital, or clinic, as much as you can. You need to be a witness to the care, be present when there is information being shared, and ask questions to stay informed.

There are critical times when it’s best to be at the bedside, including these four. Ask your nurse when these events occur so that you can schedule your time accordingly.

  • During morning rounds
  • When physicians check in
  • When nursing schedules change
  • During treatments

2. Get help to ensure there is someone present during these critical times as much as possible. Ask family and friends who have the means, the mindset and the availability to be there during these times. Assure them that you don’t expect them to do anything special, but it would be a huge help if they could take notes and ask questions you provide them. They could even call you from the hospital or clinic during those times.

3. Keep a notebook with you at all times. It is so easy to forget an important piece of information as soon as someone says it. You’re not at your best right now and your mind needs support tools to keep everything straight. Carry a notebook with you and do not feel embarrassed to use it in front of others. They understand that it’s a confusing time. Keep track of notes, healthcare team names, questions that you want to ask and concerns that you have.

4. Get help to deal with the changes that you and your loved one are (and will) encounter. Ask to speak with the social worker assigned to your loved one. Seek out patient groups online that are dealing with the same disease or injury as you are. Take time to talk about the changes that are occurring, and may occur, with physicians, nurses and counselors.

And, lastly, think about when you, and your loved one, have dealt with unexpected life changes in the past. Much of the anxiety we feel is because we don’t know what will be expected of us and our confidence to deal with it. Know that you have all that you need, either, within you or by asking others for help.

How do you deal with the inevitable change that comes with your loved one’s illness or injury?

Please join the community and post your ideas or suggestions.

About @susanharkema

Susan is the creator of MyHealthVoice.com, built upon her 20+ years in healthcare and her experiences as a caregiver and patient. She is a writer, speaker and advocate for people living with chronic or life limiting illness as well as their family and professional caregivers. Learn more - www.myhealthvoice/susanharkema/.

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