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Recent News Letter
Learning From Sad Situations
March 18,2025
Awareness of Alzheimer’s and other memory disease has increased significantly over the past fifteen years. However, there is still a lot more to be done. The recent death of a well-known couple has brought dementia care to the forefront again. Hopefully this will lead to more acknowledgment of the disease instead of finger-pointing. No family needs that. It is through awareness that we as a society can learn how to come alongside families that are affected by Alzheimer’s or other dementias.
Having taken the caregiver journey four times with our parents, my husband and I know what caregivers go through. It is natural to want to hide what is going on. Our precious loved one is disappearing slowly on a difficult journey. One filled with confusion for the patient as well as the caregiver. We don’t want them to be embarrassed or their reputation tarnished. Because memory disease affects communication and relationships, we associate it with shame. We have to get over the effects of the disease and focus on the fact that like any medical condition; it is a disease that can happen to anyone. We struggle to hide the consequences of the disease to protect their dignity. Instead, we need to embrace the disease and recognize it as such – a disease. Society does not think less of someone with cancer or heart disease.
We have learned over the years the importance of team-building. However, it can be hard to come alongside and help out because help is often pushed away. The nature of memory disease itself craves privacy. Not only does the patient want privacy, but the family members do, too. Life is no longer normal and we don’t want others seeing what is happening to our loved one. We tend to want to hide the outward signs: forgetfulness, agitation, acting out, and confusion that our loved one is experiencing. Thus, detachment sets in.
To prevent withdrawal, a team to back up the primary caregiver is a necessity. Not just one person, but several friends or family members that can take turns calling every day to make sure things are alright. Or to step in if the main caregiver becomes ill. Someone to get or order groceries and medications. A trusted family member to pay the bills, helping to remove stress from the situation. Rides to the doctor for the patient and caregiver so the trip will be relaxing for the caregiver. We in their community need to let caregivers and memory patients know we care and want to help. We don’t think any less of them because they are on this journey. After all, presidents, women basketball coaches, actors, actresses, exceptional businessmen and women, pastors, and even brilliant scientists (like my father) have suffered from memory disease. Caregivers need to know there is help out there and we want to come alongside them in love. By refusing to hide what is happening and speaking out boldly we will destroy the perceived shame associated with the disease.
Go to elizabethlonsethnovels.com/caregiverresourcepage and scroll down to find my suggestions for organizations where you can find help. My favorite is alz.com the Alzheimer’s Association. They have a 24/7 hotline. Also, on that resource page you can sign up for my monthly newsletter under “Subscribe.” And may I suggest my booklets A Gradual Disappearance and The Dangers of Denial on Amazon and Kindle for a more personal look at what can be involved with caregiving.
Suggested Resources
Previous News Letters
Moments of Peace and Quiet
October 20,2024
Your loved one with dementia has been bathed, fed, and is up for the day. You have a walk, lunch with some of their old friends, and music time at the senior center planned. It is going to be a full day, but there are a myriad of texts and emails concerning your loved one’s care to answer. You need a few moments of peace and quiet. However, you know from experience, your loved one will not just sit there with nothing to do.
This is where Amazon comes to the rescue. Yes, there are a lot of “fidget activities” on-line you can purchase from Etsy and other websites, too. Google “fidget activities for Alzheimer’s patients” and you will find plenty of choices. Such as:
1) Fidget busy boards, cubes, boxes, blankets, cushions, quilts, and even aprons
2) Magic paint books – pictures appear when water or a gel marker is applied
3) Tinkerer’s Wooden Lock Box caught my eye for the men – lots of locks to play with
4) Activity ball box with different size and textured balls
5) Activity conversations cards, this might require two people, or entertain them for awhile
These are just a few ideas that can not only keep them busy but are tactile experiences known to decrease agitation and wandering. Select one or two fidget activities at first, keeping in mind your loved one’s skill level and life interests. Perhaps someone who loved to paint will enjoy the painting or it could agitate them as it is not their original creation. Also don’t forget to check reviews and the company’s return policy.
Play some quiet music while they are engrossed with their activity and enjoy your much needed peace and quiet.
Avoiding Caregiver Resentment
May 2nd, 2024
Becoming a dementia family caregiver happens unexpectedly. There is no big preparation time – it just happens. Sometimes gradually, others times almost overnight. For a spouse, it can mean giving up retirement travel plans, a new venture, or time with the grandkids. As a result of this role change, the caregiver can struggle with resentment. There are different emotions at play, perhaps grief over a dream fading away or their relationship changing.
Caring Bridge has a great article this month on their website, Caregiving Advice page, called Managing Resentment: Challenges of Spousal Caregiving. As the writers explain:
“As a family caregiver, you wear many hats – from nurse and companion to advocate and housekeeper – all while juggling your own emotional needs. So, it’s understandable that many caregivers report feeling overwhelmed and resentful of their situation and, sometimes, the partner for they care. If you feel this way, you’re not alone.”
In the article you will find tips on how to navigate the emotional side of being a caregiver. This article is an important resource for all caregivers. As a daughter or son caregiver we often give up job opportunities or even our job, or put lifelong dreams on indefinite hold. When we do make major sacrifices, there are unexpected emotions involved.