A hospital stay for the individual with early onset Alzheimer’s disease can be very stressful and difficult. This is an important time for the care partner to strongly advocate for their loved one, as hospital and emergency room personnel may not understand how Alzheimer’s is affecting your loved one.
Some of the things that can trigger the onset of stress, agitation and delirium may include multiple medical issues, multiple people being in the treatment room, people talking loudly, and new medications. While some problems cannot be avoided, there are some things you can do advocate and care for your loved one:
- Provide the hospital or emergency room staff with your loved one’s medical history, medical records, appropriate legal documents, and a detailed description of their current symptoms.
- Provide detailed information regarding the early onset Alzheimer’s disease and behaviors you have recently noticed.
- Do not let the hospital or emergency room staff tell you how your loved one is feeling. You are the expert on your loved one. You are the one that knows what is ‘normal’ for them with this disease.
- Provide hospital and emergency room personnel with a complete list of medications, medication allergies or any adverse effects your loved one has to medications.
- Do not leave your loved one alone. Make sure that there is someone with them at all times.
- Ask questions so you can stay informed on their care plan, which may include treatments, diagnostic tests, procedures, medications, and expected outcomes.
- Get to know the nurses and the attending doctors. By always having someone with your loved one, then someone will always be present when the doctor or other medical personnel come to see your loved one.
- Have a notebook/notepad with you at all times so you can make a list of questions to ask the doctors and nurses.
- Bring special items from home, which can bring comfort and familiarity to your loved one. For example you could bring a favorite pillow, blanket, and family pictures.
- Your loved one may exhibit a behavior that medical personnel interpret as being negative, when in fact that may not be the case. Share stories about who your loved one is and why they may be doing certain things. It can completely change the perception that medical personnel have of your loved one.
Lessons from Gayle: Gayle was in the hospital two months prior to her death. She was in a wheelchair, as medical personnel were working to regulate her medications. Gayle was also having daily hallucinations. While she had a restraint belt around her waist in the wheelchair, she was leaning over, reaching down to the ground on a consistent basis. Medical personnel viewed this as her trying to get out of the chair. When Gayle would lean over towards the ground, she was also making sounds. Laura knew exactly what was happening. Gayle loved all animals and the sound she was making was the same sound she would make when she called her “babies”. Gayle’s hallucinations were of puppies and kittens and she was leaning over, calling the animal babies to come to her. When Laura explained this to the medical personnel, their view of Gayle changed, and they showed her tremendous compassion during the remainder of her stay in the hospital.