If you aren’t directly involved with someone with Alzheimer’s and dementia, you will be soon enough. Since becoming a very reluctant member of this community, I have been accruing thoughts, advice and opinions on lessons our family is learning along the way.
This is my partial list of observations and I imagine these tips are useful for anyone in a care partner role. If you are a long-distance family member and not involved in the daily care of an impaired person, you will avoid much strife by heeding these simple recommendations.
1. Do not add to the stress level. We realize you have your own life and struggles but if you grouse and complain about how busy you are, we want to throttle you. Ease tensions by remaining calm and kind, that’s what we are trying to do while fighting against a terminal illness.
2. Do not make idle excuses about why you can’t help. Ain’t nobody got time for that. If you are a hindrance to the care of a person with dementia, then you have become a burden. Sorry, but that’s the truth. Deal.
3. Reply to emails. If the care partner took the time to give you an update, the courtesy of a response is much appreciated. At the risk of being too demanding, may I also suggest something more than a one line reply? Tensions are high enough. You sacrificing your time to write a paragraph of communication will bless those in the midst of trouble.
4. If you don’t believe them, come find out yourself. Yes, it’s hard to even imagine a loved one having such tremendous difficulty with the simplest tasks. True, it is physically painful to hear of the almost hourly decline but suck it up. Second guessing people is useless and if you are suspicious, then spend time with the person and pay attention to the signs and clues that there really is a problem.
5. Encourage – I can’t tell you how much it has meant to me to receive frequent text messages from my OS saying, “You’re doing a great job, Mama!” It’s like a cookie to my soul and I gobble it right up. I know it has meant a lot to the Hubs to hear me inquire if he needs me with him to do something.
6. Don’t make suggestions on additional things they could do. For example, the Hubs and I have spent over 10 hours a day individually attending to our loved one’s needs. Even the mere suggestion that we might just run over and give this person daily medication is asking too much.
7. Listen. If a family member opens up to you and invites you into their hurt and pain, find the time to empathize. If you don’t have time to listen at that moment, offer another time when you can talk. I have noticed that care partners need to talk and unload. Once I get started, it’s hard for me to stop.
8. Contact the care partners. Appreciate their help. If you are unable to be there, then think of things you can do to acknowledge the enormity of the task. We are weary and thirsty and rarely get any appreciation from the person we are assisting. Usually we get just the opposite, quite honestly.
9. Contact the brain-diseased individual. Make all efforts to be in that person’s life. It’s kinda not about you, btw.
10. Educate yourself. Please don’t tell me you don’t like getting on the computer or reading or any such nonsense. I was reading other things before my life necessitated more education about this disease as well.
11. Pray. Yes, pray. Lift these people up to the Lord. They are deep in the trenches. A friend sent me this Scripture the other day. Another cookie to my soul.
12. Send cards, be creative. When my grandma had Alzheimer’s, my sister arranged frequent Skype dates with Grandma. I felt reassured when Lorri gave us a virtual tour of my grandma’s assisted living center. The pang of knowing my grandma would never return to her home was lessened when I saw her new dwellings.
Which one of these suggestions resonates the most with you? What would you add to the list?