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Spouse or Partner Caregiver Forum
Good morning Gig. You have been on this path a long time. You are definitely forward thinking. That will serve you well as the journey continues.
I consider caring for DH my vocation. When I am especially sleepy, I remind myself, "this is my job now". It's the most demanding job I have ever had. Of course there is NO financial compensation. I am fortunate that I am able to do it now.
We have a standard daily routine. DH wakes up around 4:30 am. I get up make DH coffee, give the dog a treat, feed the cat, get DH to the toilet, get DH dressed, light a cigarette for DH, turn on his TV program, et cetera, et cetera, et cetera until the day is done for him and I tuck him in bed at 7 pm.
I have documented the daily routine and placed it in a binder on the kitchen table. The purpose of the daily routine document is if I become incapacitated, someone else can step in and have a road map. The binder also includes his med list, his insurance information, a picture of DH along with a physical description, key contact information such as family and doctors, and other useful information.
I don't use a white board because DH can no longer read. I can imagine that the white board will be helpful for a caregiver. And it may provide comfort to your spouse to see the plan.
I have a caregiver 4 hours a day, one day a week. That is all I can afford now. I am looking for additional resources for assistance.
Sorry to hear that your DH is possibly losing one of his life’s pleasures. My DH, formerly a long time phys ed teacher and coach, was always active, running and walking long distances. At stage 6, he has slowed down drastically. We can walk around the block on a good day, but I often feel like I’m dragging him. Curbs and sidewalk cracks are a hazard; I have to hold his hand all the way. It’s a sad change for both of us.
We follow a pretty strict routine ( awakened by 7 AM for toileting, then back to bed, then up and dressed by 10 AM, 3 scheduled meals daily, shower every other evening, short daily walk if feasible, in bed for the night by 10PM). He spends much of his day seated on the sofa with soft music on and nodding off. It’s not a written schedule, it just “is”. More important than the actual schedule are the nuances within the routines. Eating, bathing, dressing, toileting, getting in and out of the car, getting seated within the house all involve my use of certain phrases and step by step physical assistance that, if varied, throw him off. He, too, is still continent; I always say I won’t allow incontinence! He still seems to know that he needs to use the toilet, just not where it is or what to do once there. I can pick up cues or “schedule “ him which keeps accidents at bay, (for now). Not sure how much longer that will last and the 24/7 constant vigilance is tiring.
I am investigating a 30 day respite for him/me at a MC facility. My greatest fear is that without his routine, he may be “out of synch” upon his return. If the respite comes to fruition, I’ll worry about the aftermath if and when it happens. Good luck; I hope you/DH can go walking for a good long time. I miss it.
We were big walkers. Tried to go every day at least a mile around a beautiful landscaped lake. The pace got slower and slower with no cardio benefit for me, but a nice place to stroll. Then my husband began to get in people’s space, think he knew them. He would greet them so loudly people would stop to see how they knew him. Just a big problem to disengage him from them. Became stressful for me because I didn’t think he would come back to the car. No walking for us now.
Our routine is a simple one. Similar to others it involves eating , washing up. Used to start at7:00 but it’s becoming 6. We go out every day for a drive thru snack and drive . He is back to enjoying the car and looking at the sights. He calls out a few signs so I think he can still read. We do music time at home. Dinner is now 5 ish , news, and then he is in bed at7:30 with the same western playing. I say the same goodnight words and promise to check on him.
No schedule here. I'm always up before her. I get my breakfast because I need to keep my blood sugar up. Then she gets up, and I turn on the TV for her, and get her breakfast. After that, maybe a little house cleaning, then figure out what we can have for meals. The rest of the day is handling things as they come.
Gig, does your DH have alz? Quite different from where my wife is. She has VD.
That woman lives a very different life from mine. She flew to England a couple of years ago to hike the Lakes District for several days with a friend. Her husband went to Thailand later the same year, just because he wanted to. If her marriage is a job, it at least has days off.