People who care for a loved one with Alzheimer’s or another form of dementia soon learn an important lesson: do not assume you understand what is happening, or that you have “mastered” caregiving.
Alzheimer’s is a progressive form of dementia. It relentlessly erases memories as well as the individual’s ability to care for him or herself. Eventually, it steals their life. Sadly, while research is ongoing, there currently is no prevention, treatment or cure, so the disease continues, ruthlessly decimating the individual.
Each caregiving experience is unique. Dementia does not progress at the same rate in every individual. Individuals have been known to live for 20 or more years with dementia, while others pass within a few brief years. The average is estimated at 8 years. And each form of dementia (including Alzheimer’s, Lewy body, Vascular, Frontotemporal, and dementia resulting from Huntington’s or Parkinson’s disease) offers its own unique challenges.
A few numbers
To set the stage, here are a few basic numbers: there are 47 million people around the world living with some form of dementia…nearly 6 million of them in the U.S. and 71,000 in Colorado. Volunteer, unpaid caregivers are a primary source of care for them. In the U.S., nearly 14 million people (two-thirds of them women) provide care for loved ones. In Colorado, there are about a quarter of a million unpaid caregivers.
Last year, these U.S. caregivers donated 18.4 billion hours of time and energy valued (at $12.61 per hour) at $232 billion – 10 times the total revenue of the McDonald’s restaurant chain.
The human side of the story
Several Coloradans – all current voluntary caregivers – have offered to share some of their personal experiences from their own caregiving journey.
- Deb Crandell, Severance – Deb has cared for her husband, Jerry, since he began showing signs of dementia in 2011. He was officially diagnosed in 2015, and is now in late-stage dementia.
“I hope this will be a help to others. However, my strength and support has mainly been very faith-centered. I see so many caregivers falling apart and/or very unhappy. Many see no benefit in advice because of the seeming hopelessness of the disease. I find purpose in what I am going through and take care of my husband as unto the Lord.” Following are some of Deb’s thoughts on the caregiving experience.
- Her biggest caregiving challenge: “There are so many challenges, and these challenges change with every new decline. The biggest challenge is probably accepting these declines and finding ways to keep my loved one content and myself positive.”
- The importance of support groups: “I find something valuable in almost every support group meeting. Sharing this experience and being willing to challenge myself to grow and accept each new normal helps me realize that life is still good.”
- Helping others in support groups: “We are always helping each other. Sharing my faith has helped some see that God loves us and trusting Him gives us the strength to keep going.”
- Anything in the caregiving experience you wish you could have done differently: “Ithink I would get help with the grieving process sooner to reach acceptance. I still grieve, but the acceptance stage makes life doable and even joyful.”
- Advice to offer others who become caregivers: “The advice I give changes as to the stage of the disease. When my husband could no longer communicate easily, I started to ‘ping pong’ conversation with him. I stopped worrying about understanding him. I would take a word I understood and say something using that word. He would respond, and I would repeat the process with another word.He assumes I understand him, and I am no longer anxious. Also, it is important to realize that people with dementia cannot manage their own mood, and we caregivers need to do it for them by managing our mood.”
- Working while caregiving: “I stopped working in May of 2014 to take care of my husband even though there had been no official diagnosis.”
- Support from family and friends: “I have great support from family and friends. The leader of our memory cafes took the time to talk to my children and spouses about the disease and how to use Contented Dementia (an approach to dementia care) to keep my husband at home and contented.”
- Advice to others just learning about or wondering about a diagnosis? “My advice is to get support and know this is doable. You can still enjoy life.”
- Dr. Rich Glasser, Denver – For the past six years, Dr. Glasser has been caring for his wife who is living with Lewy body dementia. He still works actively as a physician, and is active in a Lewy bodies support group as well as a men’s Alzheimer’s support group where he provides personal caregiving and medical insights to help other caregivers. Following are some of his thoughts on the caregiving experience.
- Advice to others who may be facing a dementia diagnosis in a loved one: “Read and learn as much as you can if the diagnosis is firm, and seek a diagnosis if it’s not clear. Understand that doctors don’t like giving this news to patients or families.”
- What is the biggest challenge you’ve faced as a caregiver? “Deciding it was time for a nursing home. Facing the fact that she’ll never live with me again.”
- What have you learned from other caregivers that you found valuable? “Try to accept what I can’t control – an impossible task.”
- Has your experience as a caregiver been useful to another caregiver? “Providing advice on when to take the car away (from a person with dementia), and advice on medications – as a physician, I understand the medications.”
- Looking back, are there any things in your caregiving experience you wish you’d done differently? “Listen to the speech therapist who knew where this washeading.”
- What one piece of advice would you offer to others who find themselves caring for a loved one with dementia? “Line up and use support if offered, but know that no one can match your care.”
- Being a working professional and caregiver simultaneously creates unique challenges.How did you make that work? “I had to cut back my daily schedule earlier, but if I didn’t, I couldn’t see my wife daily. It hurt the practice, but I could not forgive myself if we lost the time together.”
- Did you receive support from family and/or friends in caregiving? “Very limited when my wife was home with me.”
- Your medical training is clearly beneficial to others in your support groups. Does your training change your approach to your own caregiving role? “I am more forceful in asking for care changes. I am very deliberate with giving input and my desire in care for my wife.”
- Any final thoughts on the challenge of caregiving? “It is most difficult to remember to take care of the caregiver. Before my wife entered the nursing home, I was past exhausted. I hated putting her in, but I could not care for her safely if I couldn’t take better care of her.”
- Kathy Risden, Highlands Ranch – Kathy’s caregiving experience has involved a number of complicating factors. Kathy was a human resources director at a Colorado IT company when her sister was diagnosed at age 52 with young onset Alzheimer’s in late 2012 in her native Illinois.
“Since there is no family history of Alzheimer’s disease, this diagnosis completely blindsided me and my family,” said Kathy. Working with her parents, Kathy assisted her sister in establishing her will, medical and financial powers of attorney, and advanced directives. Since her sister had joint custody of two teenage children, Kathy quit her own job to enable her to travel to Illinois – anywhere from one to three weeks per month – to care for her sister and her children. She returned for stretches to care for her own family in Colorado.
Kathy managed her sister’s agency caregivers from 2013 until her placement in a memory care community in June of this year, including agency sourcing, agency selection, caregiver interviews, caregiver training and scheduling. She also has managed multiple real estate transactions and all medical needs for her sister. All the while, she worked to educate herself on the disease “so that I could be a better caregiver for my sister.”
Kathy, who is an active volunteer for the Alzheimer’s Association in Colorado, offers these caregiving lessons:
- “It’s OK to take care of yourself too. You need to be your best self so that you can take care of your loved one.”
- “Be flexible and don’t sweat the small stuff.When confronted with a challenge, ask yourself: ‘does it matter?’ If the answer is yes, address it. If no, let it go.”
- “Give yourself permission to make mistakes and forgiveness so that you can move forward.”
- “Count your blessings every day.”