Dear Carol: My wife was diagnosed with Alzheimer’s eight years ago. While it hasn’t been easy keeping her home with me, it’s been her choice – and mine. Neither of us is young, but I’m healthy and strong so I see no reason why people keep criticizing my decision to keep her in our home. The criticism’s gotten worse since she became incontinent. I’ll be the first to admit that there are extra challenges when you add incontinence to the already substantial job of caring for someone with dementia, but we make do. How do I respond? - KR
Dear KR: Most family caregivers do their best. Of course, there will be differences in approaches because both the caregiver and the person who is receiving care are unique and this creates different situations for every family.
Even taking that into consideration, caregiving is more of an art than a science. Yes, we look for information and input from trained experts, but each day and each circumstance will require flexibility on our part, and we’ll often be making split-second decisions. Again, we do our best with what we know and the tools that we have.
Added to all of that, we will have people who feel the need to indicate, with words and/or expressions, that they disapprove of our choices and methods. Still, there are things that you can do to arm yourself with confidence as well as to deflect some of the unearned criticism.
- If a current doctor is overly critical and has no sympathy for what family caregivers are doing, you may find much more comfort and confidence-building if you changed your wife’s doctor. This isn’t the same as a doctor who is offering you good advice and you being too defensive to listen. I'm referring to a doctor whose manner, as least, indicates that you are doing it all wrong, which unfortunately happens.
- Keep up on expert knowledge about dementia, particularly Alzheimer’s, by regularly visiting the Alzheimer’s Association website as well as other respected resources. Make use of government sites such as aging.gov and the National Institute on Aging, as well. In your case, you’ll want to pay special attention to their information about incontinence management with dementia. Doing this is, of course, going to provide you with valuable information, but it also arms you with "experts" to quote back to your critics.
- You might want to start a journal. No, you don’t have to have a fancy book and play new age music (though you certainly can if either is soothing). Journaling is about writing down your thoughts, both positive and negative. You may record your wife’s behavior and changes elsewhere, but if not, you could use a section of your journal for that, as well. Journaling can provide you with a safe place to release emotions as well as a way to keep accurate records so that you can update both family members and medical professionals.
- All of these steps should give you the confidence to tell people who may mean well that while you thank them for their input, you’ve got plenty of professionals who provide you with information and they are happy with the care that you’re giving your wife.
- Support groups, both online and in-person, can be a saving grace. They allow you to say what’s on your mind and the members can be a huge resource when you are looking for ideas because they’ve been where you are.
- We will, of course, suggest that since your wife’s incontinence is a real problem - as it is for most dementia caregivers - you make certain that you’re using the best products available. We suggest Egosan’s Ultra for now, especially for nighttime. Or the newest Egosan product which will be out this summer, they hyper-absorbent X-dry, which is a technological advance for the industry.
- Many dementia caregivers as well as assisted living staff tell us that the Ultra line is fantastic for preventing accidents as well as odor control and skin protection. For extra protection on beds and chairs, Egosan offers underpads in two styles; one style tucks in on the sides while the other is designed for chairs or extra protection on the bed. Even with the best protection, a loosened diaper brief or pullup can leak so these make a lot of sense.
We wish you well, KR. You sound like a loyal and dedicated husband. Your wife is fortunate to have you. Do consider help from an in-home care agency, adult day services, or even memory care when your wife gets to that stage. You can’t do her any good if your own health deteriorates.
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