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Long-Term Illness: Tough Conversations, Planning, and Support

September 1, 2019 | by rebecca stewart

Over the course of a family's lifetime, they will experience countless peaks and valleys within their unit. Of the challenges a family will undoubtedly face, in some form or another, are health issues. For some families, that's their every day normal, but for others, it's an unexpected bump in the road – one of those valleys that they'll eventually find their way through – and for others still, it gradually becomes a new reality to which they must adapt.

Perhaps it is a cancer diagnosis, a cardiac event, or a stroke. Or maybe it's the life-altering diagnosis of Multiple Sclerosis (MS), Alzheimer disease, or Dementia; certainly, there are too many to list here. The truth is, our health can change the dynamics within our families in an instant or with a gradual shift, over time.

As we all age, we see shifts in our relationships with our parents as they begin to experience changes in health. In my own family these past few years, we've undergone cancer diagnoses, knee surgeries, and near-death scares. In each instance, there were adjustments in our standard familial operating procedures. There were times, awkward though I'm sure it was, that the adult children took on more of a parental role. There was a constant looking to the nurses in the family for interpretations and reassurances. There were so many conversations, which was the key piece of advice that consistently surfaced in the interviews with our experts. With all of the conversations had, though, it's clear that there could have/should have been more.

Knowing it can be a challenge to get the ball rolling on these difficult but necessary conversations, and also being aware that it can feel all too overwhelming at the onset of a diagnosis, we wanted to start the conversation here, in these pages. For that, we connected with Joan Fawcett, Director of Admissions and Sami Young, Social Worker at St. John's United (formerly St. John's Lutheran Ministries) and Simmy Audet, Care Manager at Billings Clinic.

In the Beginning

At the onset of a diagnosis, Sami tells us that education is key. It's important, she says, to learn what the disease entails, how it will progress, and what you can commonly expect (yet, acknowledging that everyone is different).

DIAGNOSIS >> TREATMENT >> IDENTIFYING SPECIFIC NEEDS

It's helpful to include other family members in doctors' appointments. From having more ears taking in the information and more minds to ask questions. There's nothing wrong with traveling with an entourage. 

Once you've done your research, all of our experts tell us it's time to plan. Particularly with diagnoses of Alzheimer's or Dementia. Joan notes "The best plan of action is to plan, not to react." In other words, explains Simmy, make a plan, and have the difficult conversations before your loved one no longer has the ability to express their wishes. Sami adds that you should "be open with your concerns and fears and support everyone involved." Talking about and acknowledging yours and your loved one's grief is also important, says Joan. 

Knowing what the disease and its progression look like is essential. That way, you can plan for every step. Such as…

  • Preparing for when your loved one can no longer be home alone
  •      Hiring in-home help
  • Taking on a caregiving role (and what that will look like)
  • Discussing the possibility of long-term care (LTC)
  •      Determining when to make these changes
  •      Joan advises getting into the system sooner than you think you need to
  •      Sami adds: "Many people in the community do not know what LTC costs, what admission/waitlists are like, what level of care their   loved one may need, and what assistance is available…if there is an inkling of a need for LTC, they need to look into it immediately.   Take tours, get prices, arrange finances, and if needed, start the Medicaid Waiver process ASAP."
  • What to do when your loved one can no longer make their own decisions
  • Finances / Insurance
  • Medical Power of Attorney / Durable Power of Attorney (note: these do not go into effect until the person is incapacitated)
  • End of life wishes, including Advanced Directives / Funeral Plans / Estate

About those conversations…

As you're making plans and having hard conversations, all of our experts reflect the importance of being careful with people's dignity and approaching everything from a place of love, honesty, and respect.

Now, obviously, each of those stages of planning is its own conversation, and all of this can get rather heavy. So it's important, say Joan and Simmy, that you find humor and light moments where you can.

If you're not sure how to get the conversational ball rolling, there is even a form (booklet) for that. Your caseworker can get you one, or you can find such resources at www.theconversationproject.org. It's important to note, says Simmy, that these conversations should not be treated as top-secret information. You want your family members and loved ones to be well-informed of your wishes, with no second-guessing creeping in to cause issues in periods that are already fraught with emotion.

We wondered, when having these conversations, how best to help younger family members understand what's going on. Simmy advises age-appropriate inclusion, "Be open and honest – to a point." While Sami adds that she finds it important for "younger folks and littles to be involved and know what is happening." To, let them know the process and see the emotions their family members are experiencing. Both Case/Social Workers express the importance of continuing to build those relationships. A fun thing to do to involve the kids, suggests Sami, is a legacy project that can get everyone involved. 

Support Systems

In addition to highlighting the importance of communication, the other oft-mentioned advice from our experts was the need for support on all ends of the spectrum – for patient and caregivers. Again, act, don't react. If your loved one can stay in their own home, make sure they are connected – with their neighbors, with friends, with you. Support groups are an incredible resource for both sides of the equation.

"Support groups are not about fixing each other's situations. They're a place to gather, learn, be honest, share resources and frustrations," says Melissa Kincheloe, licensed clinical marriage and family therapist. "There is no judgment. It's a place where you can say anything. It lets you offload your frustrations so you can then be more patient with your loved one."

She adds that when everything feels out of control, a support group can empower you, improve coping strategies, and even help with depression and anxiety, (Role Reversal: Becoming Your Parent's Caregiver, www.whereyoulivematters.org).

One thing that Joan reiterated is that everyone needs some level of support, "No one can do it alone." Don't isolate yourselves. This is important for all members of your household.

Finally, we asked how families can best support their loved one at diagnosis and throughout their illness, to which Sami advises continuing to love and support them no matter what. "Loss of independence is difficult for folks and may cause frustration. This is where they need the most support. Meet them where they are, let them do what they can and wait for them to ask for help so that you are still treating them with respect and dignity." Really talk to your family member, don't lose sight of the relationship you had, even as it finds new footing. 

Resources:

The More You Know:

(Sami Young, social worker)

Alzheimer's is a type of Dementia that can begin manifesting symptoms as early as one's 40s or 50s. This disease creates plaques and tangles within one's brain, and in its course, brain material starts to decrease. Often, short-term memory and procedural processes are affected early on, leading to more severe complications of losing long-term memory, ability to recognize friends and family, converse sensibly, and perform activities of daily living. Families should be aware of risk factors and signs and symptoms for early diagnosis. The Alzheimer's Association is a great local resource and support system.

"Typically," says Sami, "my one nugget of advice is to meet your loved one where they are; try not to correct or argue with them. They are having a hard time as is and may recognize they are having problems but cannot express it. No comments such as, 'No, don't you remember?' or 'That didn't happen that way," or if they are conversing in a 'word salad,' to go along with it and engage them."

Multiple sclerosis is a disease that impacts the immune and central nervous systems. It damages the protective coating (myelin) on your nerves and makes it difficult for your nerves to speak to one another. An early sign is numbness or weakness in your extremities. This disease can affect motor skills and vision. Severity and progression vary greatly from person to person and MS can almost function in a relapse/remission cycle, leaving folks at a baseline for a while before experiencing any new symptoms. This disease can take a long time to progress and can eventually leave an individual unable to walk or move their arms very well.

Parkinson's is also a progressive nervous system disease that can affect one's muscles, memory, and cognition. A key symptom that most recognize is the tremor associated with Parkinson's, but this disease can also commonly cause stiffness or rigidity in a person's muscles, making movement difficult or very slow. This disease can bring about a plethora of symptoms, such as a lack of facial movement/expressions, cognition/speech impairments, depressive symptoms, sleep and eating difficulties, and dementia-like symptoms.

Sami's advice to families with a recent diagnosis or in the middle of progression is, again, to educate and plan. Have the conversations, so everyone knows their loved one's wishes. 

Originally printed in the September 2019 issue of Simply Family Magazine

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