The Dementia Queen Exploring the evidence, the anecdotes, & the hunches- a rehabilitation perspective
Guest Post from Mike Good at Together in This
As Alzheimer’s disease or other types of dementia progress, the amount of assistance the person needs increases. Sometimes this need for help is anticipated and other times it’s a crisis. Either way, being a caregiver it not a planned part of an adult child’s life.
Something is considered to be convenient when it’s easy to do, easy to get to, and doesn’t impact our own schedule. Unless you live with the person and their needs are minimal, caregiving will probably never be considered convenient. It can be manageable, however, with the right systems in place and an acceptance of your unique caregiving role.
But it’ll never be completely convenient, and therefore, some part of the caregiver’s strain will be the inconvenience of caring for another person. The level of perceived inconvenience and how if affects one’s life varies from person to person. It has a lot to do with the caregiver’s own life, their proximity to the person needing care, and their ability to deal with constant change.
Identify and Reduce
Each person must assess and address the inconveniences that are causing them the most strain (stress + burden). Once identified, strategies should be implemented to reduce this strain so that the inconvenience can be minimized resulting in a healthier relationship.
Sometimes this involves asking another person to help, rescheduling a conflicting event, or co-locating with your loved one. Becoming roommates with an aging parent is one of the most common interventions. This is because it makes it more convenient to look after the person with dementia.
Constant Change
This solution, however, will come with a whole new set of challenges – some of which will create new inconveniences. For instance, instead of having to drive to Mom’s house, you may now have to share a bathroom with her.
With Alzheimer’s or other types of dementia, coping mechanisms must be routinely adapted to meet the declining abilities of a loved one. Essentially, no solution will last forever and eventually a new challenge will pop up.
Planning & Support are Key
While you can’t make caring for a loved one convenient all of the time, you can reduce the amount of associated strain with some planning.
Start by creating a daily care plan. This plan will help you evaluate your situation, assess the person’s needs, and identify a person responsible for fulfilling each need. Initially, most caregivers find their name listed next to all needs, and this a primary reason for their elevated strain.
Creating a care plan takes work and commitment but is essential to ensuring caregiver well-being. This planning will also pay off by reducing the amount of inconvenience you’re experiencing. You may even find happiness as a caregiver.
Start today by identifying your top inconvenience and finding a creative way to reduce or eliminate it.
Caregiver Strain Index – Where Do You Rate?
What inconveniences have you experienced and what have you done to reduce them?
About the Author: Mike Good is founder of Together in This an online resource helping family members caring for someone with Alzheimer’s. Through short, informative articles and easy-to-use tools, such as the Introductory Guide to Alzheimer’s, he helps them take control and have peace-of-mind they are doing the right things.
Great post. Hate to sound cynical, but truly there’s not much about caring or a dementia patient that ISN’T inconvenient. OK, deep breath: “Start today by identifying your top inconvenience and finding a creative way to reduce or eliminate it”?
I’m trying to stay positive and keep an open mind here, but I challenge anyone reading this to find a creative way to reduce or eliminate MY top inconvenience, and hence my top stressor, which is: Being chained to my mother every waking moment that she is not in daycare–mornings for 2-3 hours and evenings for 3-4 hours, plus ALL DAY Saturday and Sunday. The specific problem: My mother *thinks* she has to use the bathroom 1 to 5 times a hour, and sometimes makes a mess if left unattended. So only another woman could help, and it’s just my husband and me here. Paid help would be $18/hr. or $200/day ON TOP OF weekly daycare expense. Do the math.
She lives downstairs, in the in-law-suite. Sometimes I would come in to find a puddle on the toilet seat or one on the floor. So we put in a motion detector that sounds an alarm upstairs as soon as she opens the bathroom door. And off I go, thundering down the stairs. If I get to her in time, as she’s hanging her cane on the sink and lowering her pants, I can get her to the commode frame that is over the toilet and help her get her pants down and help lower her to the toilet seat. I can cue her not to stand up until she’s done. I can pull the paper and fold it for her. I can hand it to her. I can make sure she wipes and then pulls her pants up–and that she washes her hands before she forgets and runs the dirty hand through her hair or uses it to scratch an itch on her nose. If it’s for a bowel movement, I can prevent her from (in extreme cases of constipation that sometimes occur in spite of daily Miralax that the dr. has authorized because the daycare center feeds the clients macaroni and cheese and other delights) manually removing the fecal matter from her rectum. But, I digress.
Talking pee only, she literally “has to go” every 10-30 minutes, and it takes me 5-10 minutes each time I have to help her. I kept a log. One day, she made the trip like 13 times between the time she came home from daycare and the time she went to bed. There is NOTHING physically wrong with her–no UTI or anything. The dr. checked all that out. It is, literally, all in her head–as confirmed by the neurologist. The only relief I get at night is that the dr. put her on Seroquel, and it has the net effect of being on a sleeping pill. Before that, I went through 11 months of sheer hell and thought I was going to lose my mind.
Mercifully, the medicine has helped. I no longer feel like I’m losing my mind. But I do feel like a prisoner. Every waking moment centers around her making trips to the bathroom. Sometimes she really DOES have to go. Othertimes she goes in there and doesn’t go at all—after all, why would she need to, as she just went 10 minutes ago!!
Yes, I could hire someone perhaps in the evening when she gets out of daycare. But I won’t pay under the table, and agencies have a 4-hour minimum. Do the math. I’m also in full charge of her all day Saturday and all day Sunday. Perversely, when someone is here, she doesn’t exhibit this behavior. We can also take her on long trips in the car, and she doesn’t have to go. Or sit through church services and then coffee hour, and she doesn’t have to go. But TV doesn’t seem to keep her away from the bathroom—she’ll get up in the middle of a favorite program, on the slightest “urge.”
If she were a toddler, I’d put her in a playpen.
If she were a dog, I’d rehome her.
But she is my mother. And I really can’t see putting her in a nursing home because she’s still really pretty with it. The ADL skills have slipped—I have to help her dress, and cue her on how to bathe. But she is still very verbal, and still mobile, and can still feed herself.
So, any ideas?
I feel so trapped.
1. Confirm with a urologist that her urges are not a physical problem.
2. Find what will engage her adult coloring book with colored pencils.
3. Music, ipad. etc
Seems like this behavior is a way of her getting you to spend time with her. Every time she goes to the bathroom she knows you will come. Dementia is memory loss it doesn’t mean that they are free from being manipulative or fearful or not want to be by herself.