Many of our clients describe those overwhelming feelings. Therefore, they often forget the questions they want to ask. The whole process after the diagnosis can be a blur. We’ve been there with many families, so we understand. Our patient advocates are always glad to help at any stage of the process and we’re just a phone call away if you’re facing a new illness or trying to get a diagnosis. Contact us for a free consultation.
Today, we wanted to share stories from four families who faced a parent’s diagnosis valiantly. Though it was not an easy time for them, they did many things we’d recommend. Because of their attitude and approach, the patient and the family had better outcomes. Though no one can change the reality of a diagnosis-and in some cases there is no cure-we can change how we experience life with the diagnosis.
Dad’s Alzheimer’s Diagnosis
Dad started having more trouble remembering. Then, he couldn’t handle things around his house anymore. He forgot appointments, couldn’t finish tasks, and had quite a few accidents. So, we began the process of getting a diagnosis. The local memory clinic did a battery of tests and sat us down to tell us Dad’s Alzheimer’s diagnosis. We had suspected, but there’s nothing like hearing that word.
Fortunately, the clinic brought in a social worker to talk to us. She connected us with valuable resources. Though we didn’t take it all in that day, when we regrouped we knew it was time to take action. We contacted EasyLiving and decided to get an assessment. Our family didn’t want to make assumptions about what Dad could or couldn’t do. We also wanted him to be safe. And, most importantly, we wanted to be prepared.
From the initial assessment, we got a list of personalized recommendations. These were simple to implement and helped keep Dad safer at home. The care manager gave us comprehensive planning recommendations too. For example, Dad had outdated legal documents. We worried that now he couldn’t redo them since he had dementia. But, she advised us to meet with his attorney as soon as possible. The attorney clarified that Dad was still competent and helped us update the documents. We got everything organized. The exact path the disease would take was uncertain, but we gained certainty that we were prepared.
Managing a Chronic Illness Diagnosis
Dad was experiencing a lot of pain, though he didn’t let on for some time. I noticed on a visit that he was extremely tired and had a lot of bruises. That’s when he said he’d also had pain and weakness. It seems Dad had also been running a fever off and on for a few months. We made a doctor’s appointment. The doctor did some bloodwork, scans and finally a bone marrow biopsy. They diagnosed Dad with multiple myeloma. It is a blood cancer in which the plasma cells become cancerous. It is not curable. Every year, doctors in the U.S. diagnose about 25,000 patients with the disease.
Though we were devastated to hear this, we soon learned that though not curable, the disease can be treated and managed. My siblings and I don’t live near Dad, but I made plans to take some time off work to figure things out. He didn’t want to move and I knew that would be a drastic change for him. So, we set out to find a specialist in his area, get a treatment plan underway, and figure out how to handle everything.
The doctor recommended some chemotherapy followed by steroids and some medications for management. He explained that the disease could bring with it various complications. These included the symptoms Dad had been experiencing, as well as infections, kidney problems, and anemia. Therefore, Dad’s medical condition would need to be monitored closely. Additionally, he would likely experience some day-to-day difficulties.
Planning for Life with a Chronic Illness
My siblings made a plan to rotate visiting for the first few months. And, we worked with Dad to get plans in place. We contacted EasyLiving and began working with a care manager. She could help coordinate Dad’s medical care and communicate with all of us. Additionally, we sought her recommendations for support services. Dad was managing pretty well, so she initially suggested medication assistance and help with appointments. Along with that, we rearranged the house to be safer and easier for Dad to navigate and brought in someone to cook meals weekly. This caregiver also served as another set of eyes and ears. And, as Dad experienced infections or weak spells, we could easily adjust the care to meet his increased needs.
The Ups and Downs: The Importance of a Consistent Care Team
There have been so many ups and downs along the way. We learned just how holistic chronic disease management needs to be. For someone who is unwell, especially an older person, they need all areas of their life to support good health. Dad couldn’t always manage his regular tasks. And, if he didn’t manage them, it would affect his health and likely cause a crisis. If he was fatigued and didn’t eat or sleep well–or get enough water–he could easily come down with an infection. Fortunately, we had a team in place to manage things. And, this saved us untold stress.
Dad did pretty well and we’re proud of how our “care team” has managed his illness. This gave Dad the option to stay at home longer. It also meant he felt better and was able to do more. Eventually, he developed some other conditions and we had a family meeting. As we discussed his needs, Dad agreed that it was probably time for assisted living. It was so helpful to have the care manager who knew us to help with this process. Dad’s been happy with the move and his team continues managing his care well.
Confusion, Depression and Managing the Eventual Diagnosis
Our father had always been sharp and quick-witted. But, for the last few months, he seemed to be slipping. He was forgetting things. And, we noticed he seemed lethargic and disinterested. When we talked to him about it, he complained of vague pains and exhaustion. Because of his memory problems, we assumed it was likely the early stages of dementia. His doctor did too, but the symptoms seemed off base.
Fortunately, there’s a great memory clinic in Clearwater so we finally decided to take Dad there. They identified that his symptoms sounded a lot more like depression. After running through various screenings, they made a preliminary diagnosis of depression. The doctor suggested starting Dad on some medication and monitoring him.
Support for Dad’s Wellness
However, we felt it was important to do more than simply medicate the problem. It was clear Dad needed more support and socialization. He had become isolated after losing Mom. And, as his loneliness worsened, he withdrew even more from activities. Thus, it was a vicious cycle. Because he always turned down invitations, his friends stopped inviting him. So he lost what social circle he had. In the last few months, he’d barely gone out and moved very little. Most days were spent watching TV and napping.
So, we spent some time helping him build back up a routine. We hired a caregiver to help in the mornings, to get him off to a good start and also make sure he was eating well. This was especially important with his medications.
As they got comfortable with each other, we enlisted her help to get Dad out to some activities. They started going on short walks and out for an occasional lunch and errands. She drove him to his church group. Later, she suggested he get back into volunteering when he mentioned how much he used to enjoy it. She gave him the confidence that he had something to contribute.
The Quest for a Diagnosis
Dad was having a variety of vague symptoms and his blood work concerned his doctor. After running numerous tests, they were still having trouble identifying a diagnosis. We went almost a month without getting anywhere near an answer. Finally, we contacted the care manager we had worked with once on Dad’s Medicare plan. She suggested a local specialist that she felt could dig into what was happening.
We made an appointment. Finally, we felt like someone was listening. And, the doctor really did her “detective” work.
Eventually, she and another specialist diagnosed Dad with a chronic ailment that could be easily managed. And, they discovered a more critical issue that required surgery. Without the right diagnosis, Dad could have become seriously ill or even died. We learned how important it is to have a good advocate and be persistent. Dad probably wouldn’t have pursued this on his own.
We worked with the care manager to be sure Dad was prepared for the surgery and aftercare. He recovered well, and we got everything lined up to manage his chronic condition. What could have turned into a nightmare turned out just fine.
Struggling to get a diagnosis? Just diagnosed and not sure what to do next? Having challenges navigating health insurance, providers, and resources?
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