Caring for someone with advanced AIDS can be difficult. But it can also give you precious time and meaningful experiences with them. It may also help you find new strengths within yourself.
You don't have to do everything for your loved one. They may have lost control over many parts of their life, so let them make decisions and take the lead when possible. Have them help around the house when they're able. Include them in family discussions.
As their health changes, so will their abilities and your role. You'll need to agree together:
- What needs to be done
- How much you can do
- When it's time for more help
You also have to keep yourself healthy, so you can be there for your loved one.
The first big step is to learn about and AIDS. It will not only help you prepare for what to expect and how to care for your loved one, but it can also ease your fears and debunk myths.
You can take courses offered by organizations like:
- The American Red Cross
- Visiting Nurse Associations of America
- HIV/AIDS service organizations
- Your state health department
Make Your Loved One Feel Comfortable
For most people, there's no place like home. Ask what you can do to make their living space feel familiar and easier to navigate.
Many folks are shy about asking for help, especially with things like bathing or using the toilet. Give them a room close to a bathroom, if you can. Leave things they might need -- like tissues, towels, or blankets -- in easy reach.
Let them talk, but don't insist. It's OK to bring up their illness. They may be afraid to, thinking it will make you uneasy. If they seem uncomfortable, change the subject.
Don't feel like you have to talk about anything. It's fine just to sit together quietly -- reading, listening to music, or watching television. You can express your love and concern without saying a word.
Protect Against Infections
Germs that either wouldn't bother you or might only make you mildly ill could be serious -- even fatal -- to someone with AIDS. So make sure you're up to date on your immunizations. Don't let friends or family members visit if they are sick.
Keep the home and laundry clean. It'll be good for their spirits, too.
Tend to Their General Wellness
Do your best to give them a well-balanced diet with plenty of nutrients, fiber, and fluids. Fatty or fried foods aren't a good idea.
Take care while you're making meals and snacks to avoid food-borne illnesses. Wash fresh fruits and vegetables well; peel or cook organic vegetables. Cook meats and poultry well, and avoid uncooked seafood and raw eggs. Keep your hands, cooking utensils, and prep surfaces clean.
Encourage your loved one to eat as much as they can. Their doctor may prescribe a drug that can help fight queasiness and throwing up.
If they spend a lot of time in bed, help them shift around often. Staying in one position can lead to bed sores, stiff joints, pneumonia, and more. A doctor, nurse, or physical therapist can teach you simple arm, leg, hand, and foot exercises that boost circulation and ease joint stiffness. If possible, get your loved one out of bed for part of every day. A nurse can show you how to move them to a chair (and back) safely.
To protect their skin, put soft material under them, such as sheepskin or an "egg crate" foam mattress, and keep the sheets dry. Massage the body parts that press down on the bed. If you notice redness or broken areas on their skin, let their doctor or nurse know right away.
Help Manage Their Affairs
You should understand what medications they're taking, when and how to take them, what side effects are possible, and when to call their doctor. Stay in touch with the doctor for updates on your loved one's health and what they need.
For some medical care or life-support decisions, you may need to be legally named as the coordinator for their care. If you're going to file insurance claims or pay bills, you may also need a power of attorney.
The subject of a will can be difficult to address, but they should make one -- before mental competence becomes an issue. They should also think about a living will, which specifies the medical care they do or don't want.
If your loved one is open to it, you can talk about their wishes for the end of their life. For example, do they want to die at home or at a hospice? Does they want to plan their own funeral or memorial service?
As difficult as this discussion can be, it can help you both feel confident that their remembrance will handled in a fitting way. And it makes decisions easier for friends and family when the time comes.
Look Out for You, Too
You also need good food, exercise, and rest. Spend some time doing things you enjoy to recharge your emotional batteries. For longer breaks, contact an organization that provides respite care -- a substitute caregiver who can fill in for you.
Think about seeing a counselor or joining a support group. Talking with others who are going through similar experiences can give you the chance to air your frustrations in a safe, nonjudgmental place and to help you feel appreciated.