A list by Paul Fields
First Things First…
2. Ask your loved one’s doctor for a referral for a full geriatric workup or neurological evaluation.
3. Have your loved one execute two legal documents
–designating Power of Attorney (POA) for both medical health and financial matters.
4. Take care of you.
5. Make sure your loved one is in a nurturing, safe, healthy and stimulating environment that avoids isolating them physically or emotionally.
6. Discuss medical directives in advance with your loved one. Have your loved one consider executing a “Living Will.”
7. Make (and continually update) a list of your loved one’s current medications and keep it with you at all times.
Dealing with the Changes You’re Noticing…
8. Be realistic. This journey is a marathon not a sprint. Learn to cope. Expect the unexpected.
9. Stop arguing with someone who has dementia. It’s a waste of everyone’s time.
10. There is an actual brain impairment hidden from your sight. Your loved one is not voluntarily choosing to behave this way. In spite of remaining quite competent vocally, your loved one’s current ability to make sound executive judgments may be diminishing,
11. Be positive. Take negativity and the word “NO” out of your vocabulary.
12. How often should you answer constant repetitive questions? Every time. Understand that for your loved one it is the first time the question is being asked. They are trying to hold on to a reality that we take for granted.
13. Reduce your stress –schedule time off for yourself and reach out to friends and family for help.
14. It is OK to laugh at the situation and yourself.
15. Calm down. Walk away for a few minutes. Drink a glass of water, go for a long walk, or take the day off.
16. Daily find ways to stimulate and soothe your loved one both mentally and physically – especially through music and songs your loved one likes, memory games, aroma (sniffing) and tactile (touching different objects) therapies and learning new words (in any language). To exercise both sides of the brain, ask your loved one tell you about an event from long ago. Once the story is told, follow-up by asking questions like, “How did it smell? What colors did you see there?”
17. Reassure your loved one that you will be there when needed and will keep them safe and secure.
18. Be empathetic by joining your loved one in their perception of the world. Learn to share the emotions, frustration, physical limitations, and confusions your loved one is now experiencing.
19. Be aware that dementia may change your loved one’s visual or other perceptions and these changes are real to your loved one. Your loved one is losing the ability to interpret the meaning of everyday sights and sounds.
20. Be inventive. Keep trying new and different approaches to resolve each situation, until you find something that works.
21. It is all too common for the primary caregiver to experience some relatives who are in denial, who avoid the situation, or just “go AWOL.” Remind yourself, while unfortunate, these reactions are typical for many families.
As Conditions Continue to Deteriorate…
22. Your relationship with your loved one will change. But remember that you’re still in a loving and caring relationship…it just isn’t the one you’re used to or once knew.
23. In time, your loved one may no longer know or recognize you. Go to their reality, become a new, caring friend, and learn to stay in the moment with them.
24. Any change in physical environment (such as going out for dinner or just leaving a room) may become more and more confusing and stressful for your loved one. Know your loved one’s limitations as well as your own.
25. If you need to find a care facility, 1) proximity and 2) planning for a continuum of care that will meet your loved one’s needs as conditions change over time, are important considerations.
26. Ways to Communicate Effectively:
With your loved one:
A) Use positive, simple, direct, face-to-face speech and respond with reassurance and calmness.
B) Avoid the “Do you remember” and the five “W” questions (who, what, where, when, why & how). Instead, ask about your loved one’s current likes and feelings.
C) The most intelligent things you can say: “I love you.” and “Don’t worry, I have everything under control.” and “You are safe.” and “I’ll take care of it for you.”
With care facilities and hospital staff:
Create and regularly update a “List of Quirks” that uniquely describes your loved one’s unusual special care needs. Quirks are those unique, individualized, uncommon likes and dislikes that no professional responsible for caring for your loved one could possibly know at first meeting, but needs to know to take proper care.
27. Be on the lookout for any sudden spike in dementia-like behavior; it may be a sign of dehydration, a urinary tract or other infection (UTI) and/or the side effect of a specific medication instead.
28. Advocate. Advocate. Advocate for the people you love.
29. Be sure that your loved one can physically hear you (earwax buildup can be a problem). Be sure eyesight problems, changes in vision and reports of seeing things are addressed medically.
30. Find ways to integrate music into daily routines, and focus on memories your loved one still retains. For instance: Look at family photos together. Read aloud to your loved one. Talk about what you did today. Hold hands. Comb their hair. Apply makeup. Play their favorite music over and over. Sing favorite songs or old lullabies and nursery rhymes to them. Say aloud prayers they know.
31. Especially when conversations no longer seem to work, bring tangible gifts in hand for your loved one—flowers and plants, food, music, cereal for nibbling, ice cream, coloring books, objects they can touch and admire; apply lotion to hands and feet.
32. The most important thing to remember: No matter how mentally lost your loved one becomes, a person’s humanity never diminishes and a person’s feelings are the last sense to fade.
33. Prepare yourself for your loved one’s eventual death — emotionally, physically and spiritually.
34. Once your loved one dies, take advantage of bereavement counseling services available to help you grieve your loss.
35. Finally, remember you’re not alone. Others have been through what you’re experiencing and understand. Use a support group. Constantly network with others. Don’t under-estimate your collective experiences and wisdom!