Join the Journey- What to Do and When to Do It?
I can’t tell you how many times I’ve watched or read about an informal at home caregiver of a loved one with dementia that “threw in the towel.” In spite of their best efforts, they finally realized that they could no longer meet the demands of caregiving. Believe me when I say, there is no shame in that. None.
Alzheimer’s is a progressive disease which translates to, things are only going to get worse. Not everyone was put on this earth to be a caregiver and those in the world of Alzheimer’s dementia caregiving are playing in the big leagues. In the early stages of the disease things can be very manageable but as time moves on that is going to change and that means the demands of the caregiver have to change as well. Maybe they’ve transitioned from just cooking for their loved one to having to actually sit and feed them. Perhaps those that could at one point shower or bath themselves now need assistance or worse, perhaps they’re now refusing to bath all together presenting a new challenge. Could they dress themselves before but now they need you to help them with that? How about taking medications? Perhaps there was a time when all you had to do was put them out for them to take or use an automated dispenser but now, you have to be the one to be sure they take what they should when they should because they no longer see the need. “I’m not sick, I don’t need to take pills” you’ll hear them say. And then there’s the issue of ambulation or walking around. As the disease progresses they become less stable and tend to shuffle more than actually walk. Now the at home caregiver is at their side to insure they don’t fall. What could go wrong with that? An elderly wife escorting her unstable hubby to the living room from the bedroom can and has ended with both of them on the floor.
In my capacity as an Administrator, I was asked countless times by visiting families, when will I know it’s time to transition him or her into a higher level of care? In the majority of these situations, the fact that they felt compelled to visit my assisted living community in the first place is a pretty telling sign. What happened that made them think it might be time for that change? Are they isolated and depressed being alone? Are they not eating well? Are they making a mess of their medication regimen? Are they no longer safe because stairs are no longer their friend? Those are challenges that folks without dementia face.
If your loved one has dementia, it’s no surprise, there are more obvious signs. Incontinence that they cannot manage, wandering, paranoia, refusing to eat or bath, problems communicating, refusal to take medications, erratic behaviors etc.
In my experiences I have spoken to a wife that put a couch in front of the bedroom door every night so he couldn’t wander and she could sleep. Another husband confessed he would tie his wife in bed at night so he could sleep and the family that would take moms shoes off and tie her in a chair so she wouldn’t wander. Appalling to say the least.
As I’ve said so many times, be proactive and be prepared to take the next step. Understand what your limitations are and be informed about what your options are in the future and make sure everyone in the family is on board. The family member that is telling you that all you have to do is just keep her home and all will be well is never the one actually living with the situation. They’re not the ones sleeping with one eye open.
Questions? Email me at firstname.lastname@example.org. Join the Journey.