As a caregiver, you will help your loved one with many aspects of daily living—like bathing, dressing, and feeding. You will probably also help coordinate transportation and take on a larger share of household chores and errands.
Although it may sound selfish at first, one of the best things you can do for your loved one is to take care of yourself. If you become exhausted, develop health issues, or grow resentful, nobody will benefit. The better you are to yourself, the better caregiver you will be.
Here are some additional things you can do:
- Anticipate needs. Your loved one’s needs for care, transportation, home modifications, and equipment will evolve. Try to stay one step ahead of the game. Talk with your ALS Association care services coordinator and clinic team.
- Include (and empower) your loved one. Remember that your loved one still has the same cognitive abilities as before. Discuss everything together and let him or her be central to the decision-making process.
- Normalize life. ALS will consume enough of your lives. Continue your everyday routines. When possible, do the things you’ve always enjoyed, like going to ballgames, seeing friends, watching TV series, and visiting family.
- Get out of the house. Whether running errands or meeting friends for dinner, getting out into the world can be a refreshing and stimulating break for your loved one.
- Massage and stretch. With ALS, muscles can tighten and become less flexible. While you are sitting on the couch watching TV, for example, gently massage and stretch tight areas, like hands and fingers. This can help with flexibility and range of motion. It is also a nice way to connect. Ask the physical or occupational therapist what would be most helpful.
- Take a trip. Logistics permitting, try exploring somewhere new or visiting old friends. Even with a wheelchair, you can travel by plane and rent handicap-accessible vans through Wheelchair Getaways.
- Remember what is important. Your life may change due to the diagnosis, but remember that your loved one is still the same person. Although you will need to adjust to a new normal, you can still spend loving and quality time together.