I understand and don’t want to be a burden on my wife
I was diagnosed over two years ago and am having balance sleep issues walking straight up
We are looking into caregiving and prepping our house for easier caregiving

Thank you so much for all you shared ! It was really meaningful. ❤️

Great question! I wish I would have asked it! My husband and I have gone through Stage 5 and I was his caregiver. I have share d some of our journey and "helps" with others on this site. It's so helpful to understand and get ideas before you need to take action. I would be happy to help.

I was a caregiver for my beloved hubby until June of 2022. I knew that Aging and Long Term Care has programs for Family Caregivers & lists of care giving agencies and care facilities.Take time with family and friends in your comfortable environment.. At some point medications you may no longer work and your medication may have to be reduced or switched. Keep doing whatever you can for yourself physically, everything is exercise. Keep your social connections strong. Tell others specifically how they can help. Say the sweet, meaningful & funny things you want to say. Mobility issues get harder: balance, gait, and strength more affected. Clear your environment for ease of navigation. Remodel the shower and bath, exits, and entry with multiple grab bars added inside and outside shower. Get good caregivers, in addition to your spouse, who can be involved in helping with your ADL's, errands, housekeeping, personal care, socialization. My hubby was up a lot at night with incontinence issues and our sleep was interupted. Started him using Depends, when at first, they seemed optional. Purchased easy on/ off clothing such as western shirts with snaps, pants without belts, pull on shorts & pull on sweats or athletic pants, zip up vests, oversize jackets with adjustable cuffs. Set up a hospital bed, with gel pad topper,where I could see and hear him, a & used multiple washable bed pads. Had bedside commode, and male urinal ready. Used an electric recliner with a simple remote. I learned how to leverage my body to transition him between sit to stand, toilet and bed. Stay in contact with your Neurologist or Medical Doctor. They can send you to the hospital for a swallow study, write a RX for speech therapist or occupational or physical therapist. Home Health is a useful tool with therapists, nurse, social worker come to your home if you cannot essentially leave your home. At some point, you will develop swallow issues. We placed all pills on top of a tsp of applesauce and they went down easily. Hubby's "wet cough" actually happened when his Dysphagia Level increased: food prep needed to change to moist foods, small bites...no more "thin water"...but needed to add "Thick-,It" to all water to make it "nectar thick". Go online to find a " nosey cub", a cup/container to drink from, so you don't have to tip your head back as far. Hubby was taken to hospital when one day, he could no longer bear weight. After a week, it was determined, he should be placed on hospice. He was taken to hospice house and I petitioned for hubby to stay until he passed, paying the daily rate. They used a MACY Catheter to deliver his medication. He was peaceful and I was able to be with him till the end. Most people are not able to totally take care of their beloved with Parkinson's Disease at home .Blessings on your journey!