Practical Advice and Thoughts

drais25

I wanted to share my thoughts and give some practical advice of my journey in the last year and half caregiving for my mom. By no means, am I an expert, but what I found has helped ease my days, months and this year. I am a medical practitioner and a daughter of someone who has this. I've seen both sides of the system and know how to get the right things in place. I wanted to make a list and if others have their practical advise and wisdom to comment below.

Practical Advice:

1. First, if they don't want to shower, I recommend Scrubzz disposable no rinse bathing wipes. My mom doesn't generally have a problem with showering, but there are times we have to navigate that she doesn't. So I have used those for a "bird bath" or "PAT" as nurses call it.
2. Ask their primary or neurologist about Home Health Care. Medicare pays for this. Since they have a chronic and essentially terminal condition. You have have a nurse (palliative or pysch) visit weekly, bi-weekly or monthly. If you live in SoCal, Hoag offers this. Has been tremendous help as the nurse communicates with her Neurologist. So when we get to our visits every 3 months, he is in the know. She also helps adjust or add medication. Also you can get physical therapy as well if needed.
3. I get my groceries delivered often, so I can do two tasks. For example give her a shower while having groceries delivered for lunch.
4. I bought Airtags off amazon. She has a airtag that I put as a watch, one in her purse and one attached to her shoe like a charm.
5. I also bought a medical bracelet off Amazon to identify her.
6. Embrace their quirks, annoying as hell quirks ;) … I give her a brush, mirror and her clip on hair to brush while I try to cook breakfast. So whatever activity that can distract them for 5 minutes is still good.

There are more, but I know this is deeply personal and individualized. Its a beast of a condition for some including myself. Some days I am burnout and want to crawl in a hole and hide. Some days, I am grateful I get to help her transition in this chapter of her life. Other days, I'm furious that I am doing this all alone and the people I thought that would be there for her have all disappeared.

We are all in this together walking them "home". It's probably the most draining emotionally, spiritually, physically and mental role we will ever have. God has trusted us, so we are all here.

Thank you souls for opening up. You give me hope that I am not alone and there are people out there that understand. Being seen and heard in this journey is everything.

SusanB-dil

Thanks for posting this.

Yes, we also utilize the Scrubbz when needed.

Love 'embracing the quirks'. Agree - those 'quirks' can be annoying, but true, they are still hers.

Rach75

thank you for the advice… it will come in handy as i can foresee giving my mom things to hold , to do to occupy her mind/ distract her

persevere

I also recommend bringing in hospice sooner than later. You get immediate help when things go sideways and an aid who will handle bathing. Most visits will by the nurse will last 40 minutes to an hour and help give you a short period of normalcy.

mjspurgeon1

I am navigating this with my Pop who lives in a Tiny home in my backyard. Another suggestion is getting the YOLINK door alarm. He has only 1 door, it alerts my phone every time he opens his door so I can head to the cameras to see what he is doing. I have cameras all over the house and outside the house. We do place locks on the gates so he cannot wander off our property. I have been able to hire some outside help to sit with him partially throughout the day, giving him companionship and making sure he eats. We are swiftly coming to more of a full time position and trying to keep him in his home. His progression is rapid and we have seen several stages come and go thankfully. He had a period of time of inappropriate behavior. We prayed this would pass soon, it lasted about 4 weeks. Please check your local council of government organizations, they do have grants for such things as this. Overall though I am exhausted and have spent the last 5 weekends either at the ER, urgent care or VA appt. I do work full time and manage a farm with my husband. I understand the anger about being the only caretaker as I am just that. It seems no one wants to help and honestly I get a little jealous how they continue their lives of shopping, going out to eat, enjoying their days. For now…there is no such thing for me.