Patient Care - Hospice

Carol Bluestein - 2nd Opinion - Return

Caring for a Loved One
Hard Lessons Learned • Wonderful Memories Earned
Stroke Recovery

Introduction

General

Patient Advocate: If family is not with your parent or patient, there is a good chance neither is anyone else. I know this is harsh, but there are just not enough nurses or aides to be at the beck and call of your parent or patient. The nurses and aides have a large patient load AND accompanying paperwork keeping them busy and are often over worked. Buzzers are good at alerting people, but immediate care is often for issues deemed emergencies only. For everything else, the wait can be five minutes to a half hour or longer. NOTE: Intensive Care Units have a shorter response time.

No one knows your family member like you do. Whether they can talk or not, you do know what they want or need. Be pro-active and help the staff understand their needs.
- An example... When my mother had her first stroke at 82, I was by her side as was her husband, my step-dad, 91,. He was concerned and basically hysterical. My mother quickly lost her ability to speak. However, I kept talking to her and knew that she retained her ability to understand what was going on and could indicate yes and no.. I explained everything I knew to both of them and interfaced with the doctors. I told the doctors that a) my mother understood everything and b) nothing negative was to be said in front of her or my step-dad. The hope of getting better had to remain with both of them. When the neurologist came in to test my mother, I explained the situation before the exam. In spite of my information, she ask a question that required more than a shake of the head. OK, I get that. See if your parent or patient can speak. She then asked another and a third. I could see my mother getting very frustrated - she knew the answers but could talk. I invited the doctor out into the hall. The doctor said after the exam. I said, "Now. Please." I re-explained the notion of positive feedback and we went back in. The doctor continued with "yes" and "no" questions -- and when she left, my mom felt very proud of herself -- and I'm sure the doctor had all the data she needed. There is more than one way to be effective. H, N, HC
Stroke patients often have weakness on one side or the other, depth perception difficulties, emotional and communication issues. Keep family pictures around and test memory. See if they can separate a card deck into four suits or name the card or, even play cards.
- My mom, a Life Master bridge player could not do the first two easily, but she could open a hand and bid it properly. Amazing.
I or a member of my family was with my mom from mid-morning to bed-time -- we made sure she was stimulated, watched her rehab so we could mirror some of the activity when we were with her; we helped her eat, dress, exercise and, yes, go to the rest room. And, when assistance was needed, we would go out and get some one to help. We assisted where we could, giving the staff time for other patients, and when we needed help, the staff was very responsive.
Be as honest as you can so your patient can help make tough decisions.

Mom's second stroke affected her left brain. She reacted with anger and stubborness. The physical therapists reported she was uncooperative. Why, I asked Mom. Mom said she didn't like the therapists. So, I sat in on some sessions. Clearly excercises that were intended to maximize brain function did not appear to be important. In the end, I asked for a list of ten things Mom would have to be able to do so she could go home. It took a while, but I got the list and Mom was able to focus and get her walking papers..

Be consistent. As people age, they get set inin their parent's world their ways -- but you knew that. Patent/patient resistance caretakers get is because there is change in their world and they are frightened. Their reaction is often anger and stubbornness.
- When you have to change their daily routine, try to keep the new routine the same from day to day. Within days, they will recognize the pattern and be more responsive.
- If possible, keep the people working with your parent or patient consistent , keeping routine consistent. New faces every day can be disorienting.
There is no such thing as "five minutes"-- no matter who says it. It is always more like 30 minutes. Plan accordingly.
Safety and Rehab: watch, learn and listen while your patient is getting therapy (of any kind) so you can be an effective support. Now, something I did not do: have someone video you while you are working with your patient. For example, do one for helping your parent or patient to stand and sit. Then show it to anyone who will be working with your parent or patient -- especially siblings -- so they can maintain the consistency.