Caregiving for Advanced IBM

Supporting the caregiver and the patient — daily care, transfers, and preventing burnout

To caregivers: You matter tooTMA acknowledges that care partners are an "invisible, unpaid workforce supporting the foundation of our healthcare system, providing 80% of all home care services." Your health and wellbeing are just as important as the patient's.

Transfers

Transfers from bed to wheelchair, wheelchair to toilet, and seated to standing become progressively more difficult as weakness advances. Safe transfer technique is essential to prevent injury.

Equipment

  • Ceiling track lift: Gold standard for home transfers; installed in bedroom and bathroom
  • Portable Hoyer lift: Can be moved between rooms; good alternative
  • Transfer boards: For lateral transfers between surfaces
  • Power stand-assist lifts: Help patients participate in transfers

Training

  • All caregivers should receive proper transfer training from PT or OT
  • Improper technique can cause injury to both patient and caregiver
  • Practice transfers regularly to maintain skill
  • Adapt technique as the patient's condition changes

Daily Care Routines

Bathing

  • Shower chairs, handheld shower heads, grab bars, and roll-in showers
  • Bed baths may become necessary in advanced stages
  • Warm water and gentle products for sensitive skin
  • Allow extra time — don't rush

Dressing

  • Adaptive clothing with Velcro, snap, or magnetic closures
  • Compression garments may be recommended
  • Dress in sequence: affected side first
  • Seated dressing for safety

Toileting

  • Raised toilet seats with armrests
  • Bedside commodes
  • Patient lifts for bathroom transfers
  • Incontinence supplies if needed

Feeding

  • Meal preparation following SLP dietary recommendations
  • Thickening liquids per speech therapist guidance
  • Assisted feeding as needed
  • Feeding tube management if applicable
  • Oral care — essential for aspiration pneumonia prevention

Preventing Caregiver Burnout

Caregiver burnout is real and common. Many care partners juggle employment responsibilities or lose significant lifetime earnings and social security benefits. Depression, anxiety, isolation, and guilt are common.

Warning Signs

  • Feeling overwhelmed, exhausted, or hopeless
  • Withdrawal from friends, family, and activities
  • Increased irritability or anger
  • Sleep problems or changes in appetite
  • Neglecting your own health
  • Feeling resentful toward the person you're caring for

Prevention Strategies

  • Accept help: Let others assist — don't try to do everything alone
  • Set boundaries: It's okay to say no to additional tasks
  • Join a support group: TMA has a Care Partner Forum (password-protected)
  • Maintain your own health: Regular checkups, exercise, proper nutrition
  • Stay connected: Keep friendships and social activities
  • Consider counseling: A therapist can help process complex emotions

Respite Care Options

  • Adult day care programs: Provide supervised care during the day
  • Home health aides: Medicare covers part-time skilled nursing and home health aide services when patient is homebound
  • Short-term respite care: Available through state programs and nonprofit organizations
  • TMA Care Partner Forum: Private community for care partners to share experiences and resources
  • Family caregiver training: Train multiple family members in care tasks so the primary caregiver can take breaks
You don't have to do this aloneMultiple family members and professional caregivers can share the responsibility. TMA encourages training several people in care tasks.

Caregiver Resources

  • The Myositis Association: myositis.org — Care Partner resources and forum
  • Caregiver Action Network: caregiveraction.org
  • Administration on Aging: acl.gov
  • National Alliance for Caregiving: caregiving.org
  • National Institute on Aging: nia.nih.gov
  • TMA YouTube videos: Supporting caregivers at every stage

Advance Care Planning

While it may be difficult, advance care planning ensures the patient's wishes are known and respected. This is especially important for advanced-stage IBM patients.

  • Advance directives: Legal documents specifying medical treatment preferences
  • Healthcare proxy: Designate someone to make medical decisions if you cannot
  • DNR orders: Discuss Do Not Resuscitate preferences with your medical team
  • Palliative care: Focus on comfort and quality of life alongside curative treatment
  • Hospice: When appropriate, hospice provides comfort-focused care at the end of life
Start conversations earlyIt's easier to discuss preferences when the patient can still communicate their wishes. These conversations can be revisited and updated as the disease progresses.