Embracing Your Unique Role as a Spousal Caregiver

For married couples, the diagnosis of Alzheimer’s disease often occurs after the couple has been married for decades. With such a history of shared experiences, spouses have long since fallen into a predictable routine. When the symptoms of Alzheimer’s begin, things such as memory loss, disoriented thinking and personality changes can affect the marital relationship.
Despite the fact that spouses provide the majority of care for persons with Alzheimer’s Disease, and that they share the common experience of being married to the person for whom they are caring, it would be wrong to assume that all spousal caregivers’ perceptions are the same. While there are many tasks similar to caregivers – organizing their loved one’s day, providing companionship, assisting with daily activities, perhaps even helping with dressing, bathing and feeding – the approach and the experience for the caregiving spouse can be as varied as the spouse providing the care.
Research studies on the experience of marriage for spouses of Alzheimer’s patients show that some of the burdens most spouses encounter include:
1. guilt for wanting an intimate relationship or for wanting their burden of caregiving to end;
2. frustration with the inability to relate to their loved one due to his/her mental capacity;
3. resentment of having to suppress their own needs or of the marriage vow which promised to care ‘in sickness and in health’;
4. embarrassment or confusion over changes in the spouse’s behavior such as their ill spouse making sexual advances toward the caregiving spouse when they no longer know his or her name;
5. fear of acting selfishly for wanting to attend to one’s own needs and perhaps most common,
6. loneliness and depression,
However, approximately one third of spouses experience these emotions to a far lesser degree, if at all. Things such as one’s overall happiness with their marriage prior to the onset of Alzheimer’s, feeling a sense of commitment to the person as compared to the wedding vows, and having a generally positive attitude and sense of resiliency contribute greatly to the caregiver’s experience and how they continue to find meaning and a sense of peace in such a challenging situation.
If you are one of the minority of caregivers who are not only surviving, but thriving in your caregiving role, bless you! May your outlook be an inspiration to others. If you are a spouse struggling with caregiving, perhaps a good place to start is to simply be honest about your feelings. You don’t have to share them with others; but being honest with yourself about what you can and cannot do may give you a sense of freedom from having to live up to what society presumes a marital relationship should be. Of course, we all want happiness, and your feelings about being a caregiver are neither good nor bad, they just are. Understand them to be your emotional guidance system, and let them help you in directing how you provide care for your husband or wife. When ready, find others who understand and can partner with you on your journey. Naysayers and critics have no place when it comes to honoring what you know to be true for you and your loved one. This is not to say that those who are finding hardship as a caregiver should throw in the towel. Rather, it is to encourage you to know that in starting at a place of honesty, surprising solutions to perceived problems can arise.
Providing care for someone with Alzheimer’s or another form of dementia is not about logic, following a standard protocol, or pleasing the masses; it’s about individualized care, trusting your gut and both providing assurance and experiencing assurance. When we honor our feelings and act out of kindness and love, there are no wrong choices.

Elizabeth Shulman, D.Min., is the author of Sanctuary in the Midst of Alzheimer’s: A Ministry for Husbands and Wives Caring for a Spouse with Dementia. To contact her, or to find out more about her work, visit: http://www.elizabethshulman.com.
Resources:
Rose A. Beeson, “Loneliness and Depression in Spousal Caregivers of Those with Alzheimer’s Disease Versus Non-Caregiving Spouses,” Archives of Psychiatric Nursing 17, no.3 (2003): 140.
Bonorandi, Andrea; Williams, Christine., “Voices of Couples Affected by Alzheimer’s Disease,” FAU Undergraduate Research Journal, [S.l.], v. 3, n. 1, p. 57, March 2014.
Rich O’Boyle, “Intimacy, Marriage and Alzheimer’s Disease,” [on-line article] Elder Care Online; available from http://www.healingwell.com/library/alzheimers/oboyle2.asp; accessed 19 November 2005.
Joling K, J, Windle G, Dröes R, -M, Meiland F, van Hout H, P, J, MacNeil Vroomen J, van de Ven P, M, Moniz-Cook E, Woods B, “Factors of Resilience in Informal Caregivers of People with Dementia from Integrative International Data Analysis,” Dementia and Geriatric Cognitive Disorders. 2016;42:198-214.
Watson, B., Dawn A.L., Savundranayagam, M.Y., & Orange, J.B., “Links Among Communication, Dementia and Caregiver Burden,” Canadian Journal of Speech-Language Pathology and Audiolog, (4), 276-283.

Join us for our FREE Caregivers Seminar

The Alois Alzheimer Foundation is hosting a
FREE Seminar
“How to Better Communicate with Those Affected by Memory Loss”
on Tuesday, May 14, 2019
at 6:30pm
with
Teresa Youngstrom RN, CDP

Those attending will learn a greater understanding of what those with Alzheimer’s disease and dementia are feeling and why their reality is all they can see. You will take with you multiple tools to improve communication skills which can enhance relationships and reduce stress associated with being a caregiver.

Theresa Youngstrom is a Registered Nurse and a Certified Dementia Practitioner who understands firsthand the challenges caregiving can bring.
Her own personal experience with a parent with memory loss fuels her drive and compassion to teach other caregivers and healthcare professionals.

For more information about this event, please feel free to call (513)605-1450.
To register: You may call (513) 605-1450 or click the link below to register online.

Click Here to Register Online…

Aromatherapy and the Behaviors of Dementia

There is nothing more difficult than trying to calm the behaviors that moderate to end stage Alzheimer’s exhibit. Long-term care facilities have been working with person-centered care to meet the needs of the residents. After determining the origin of the behavior, aromatherapy works as a safe and gentle modality that is calming. Lavender oil has a chemical component – linalol – that is calming to the central nervous system. It is considered a very safe and effective oil to use with those who have dementia.

Besides being safe for the resident – Lavender is also safe for staff and visitors. It serves a secondary benefit to staff as it reduces symptoms of stress.

The program that is being instituted at The Alois Alzheimer Center encompasses general diffusion in the common areas. The oil blend to be diffused is equal parts of Lavender and Pink Grapefruit. The Lavender is calming and the Pink Grapefruit is emotionally up-lifting. Again, the staff benefits from these oils being diffused during the day.

Second phase of the program is a study of aromatherapy and sleep. Insomnia is a chronic problem for those with dementia. This study will use small room diffusers in the rooms of residents selected to participate. In the evening, a few drops of Lavender will be put on the felt pad that is slipped into the diffuser ball. Lavender is very effective for insomnia.
Then in the morning the Lavender felt pad will be replaced with a felt pad that has a few drops of Pink Grapefruit. This scent should gently wake up the resident.
Data on sleep is already collected by nursing. So there are no extra steps to record data for this study. Any insomnia or other night time disturbances will be noted. The study will last for eight weeks.

Final phase of the aromatherapy program will be custom blends to help residents with difficult behaviors calm down. I will put the custom blends together after looking at the resident’s chart and noting history, present and past diagnoses, allergies, and medications. This is to insure that the oils are not contraindicated for that resident.

Aromatherapy is a safe and gentle modality that can improve the resident’s quality of life.

(The aromatherapy program for The Alois Alzheimer Center is funded by The Alois Alzheimer Foundation, a 501(c)3 program wholly owned & operated by The Alois Alzheimer Center. This is part of the Alois Foundation’s mission to responsible research.)

Patricia Faust, MGS, CAt
Gerontologist/Brain Health Specialist
Certified Clinical Aromatherapy
513-382-3947
patricia@myboomerbrian.com
http://www.myboomerbrain.com

pcf consulting is the umbrella company over MyBoomerBrain.com
Speaking, teaching, coaching and consulting about brain aging, brain health and brain function form the bulk of the work under myboomerbrain.com
I am a preferred vendor for Best Upon Request for Eldercare Resource Services from North Dayton, Cincinnati to Northern Kentucky.
Consulting and coaching comprise my work with financial professionals concerning their aging clients.
As a certified clinical aromatherapist I consult to long-term care about solutions for the behaviors of dementia.

Interested in a Mini Vacation to Las Vegas?

The Alois Alzheimer Foundation is hosting our “only” fundraiser for 2019. This year we are hosting a raffle.
Raffle prizes are:
* 1st Prize: Las Vegas 3 night stay at Elara by Hilton (Center Strip)
Sept. 13,14,15 (check in Sept 13 check out Sept 16)
Junior 1 King Suite with sofabed- sleeps 3; living area; kitchenette
(** does not include flight or meals**)

This vacation stay is donated by

* 2nd Prize: $500.00 Visa Card
* 3rd Prize: $100.00 gas card

Ticket Cost: $50.00 each or 3 for $100.00

Live drawing to be held on
Wednesday, July 31, 2019
at the Greenhills Concert in the Commons between 7-9pm
Drawing will be live on the Alois Foundation’s facebook page!

You may purchase tickets two ways:
In person at the Alois Alzheimer Center- 70 Damon Road Cincinnati, OH 45218
or
online at: http://events.constantcontact.com/register/event?llr=f7uamblab&oeidk=a07eg8z238f5c90388a

To learn more about Elara by Hilton you can go to the website: Elara,Las Vegas

The Alois Alzheimer Foundation is a 501(c)3 organization. Anyone who does not win can claim the ticket as a tax donation!

If you have any questions, please call and ask for Mary at (513) 605-1450