Can a Loved One with Dementia Live at Home? Part I

When-Dementia-Moves-in--Can-a-loved-one-with-dementia-live-at-home-Part-I

by Wendy Pester~
Since I am a Certified Dementia Specialist, I’m often asked “can someone with a dementia remain in the home? I would like to share my personal story with you before I answer that question.

Many, many years ago my husband’s grandmother moved in with us for a short period of time, much shorter than we had anticipated, as it wasn’t until she moved in with us that we realized there was a problem. Irene had been on her own most of her adult life as she divorced at a young age and never
remarried and her only child was off to serve his country at the age of 18.

A very strong-willed, independent woman, Irene never relied on anyone for anything, and she was never wrong. I’m sure you know the type. But this wasn’t a problem for me, I adored Irene and prior to her moving in, I would visit with her a couple times a week. I would take her meals and make sure she had what she needed from the supermarket. We’d walk up to “The Ridge” to frequent some of her favorite haunts, where we would sit and have coffee and visit with friends.

I used to love how she’d tell her friends about the things we’d do together and what a good cook I was. Usually introducing me as her granddaughter I never suspected a problem; after all, I was her granddaughter by marriage, right? But perhaps I should have suspected something was awry when she began asking me “who is that man” when referring to my husband, her own grandson. Or when she would tell me someone was sneaking into her room and stealing her pants. I should have seen the signs, but then again, I was young, had never experienced Alzheimer’s to any extent, so I didn’t know to be looking for signs of any kind.

With three school-aged children at home, we knew we would have to make some changes, but were not prepared to have to “baby proof” our home all over again. Nor were we prepared to explain the disease and Great Grandma’s behaviors to our children. Young children often think that they have caused the change in grandma or grandpa, that they are to blame for the behaviors. It’s important to discuss the disease with your children and explain what behaviors they may witness, so that they understand, as best as a youngster can understand, that it’s a disease that steals memory and causes unusual behaviors. They need to understand they didn’t cause it and they can’t catch it. For information on how to explain dementia to a child visit The New York Times.

When Irene moved in, my husband and I both worked full-time, opposite shifts so that someone was always home for the kids, and now Grandma. As it turned out, Irene was the one who needed more attention and supervision than the children. While it was a joy to have three generations under one roof, and delightful to spend time reminiscing with Irene, it wasn’t long before she would start leaving the water running in the bathroom sink, or turn the stove on to make tea, but forget to turn the burner off. It wasn’t until the day I walked into the kitchen to find her putting a dish towel on top of the lit burner that I realized exactly how dangerous these new living arrangements had become. Our happy home was quickly becoming a danger zone.

So, can a loved one with dementia continue to live at home? My response, “That depends.” It depends on how far the disease has progressed. It depends on how willing you are to make the necessary adjustments to ensure a safe environment. It depends on whether you intend to have someone in the home to provide care and supervision. And it depends on how much you know about dementia, and whether you’re living in denial of the disease or whether you’ve accepted the brutal reality of dementia.

More importantly is accepting that if your loved one is no longer safe in their own home, they won’t be any safer in your home. I strongly advise couples against moving a loved one in to their happy home if they want it to remain a happy home. It’s difficult enough living with an in-law, but throw dementia into the mix and you are sure to lose not only your happy home but quite possibly your spouse.

I have seen dementia tear families apart; it’s not fair to you, your partner, your children or the one suffering with dementia. Be prepared to make the decision, which may be a difficult one for you, but the most appropriate one for your loved one, to transition them to a secure dementia unit, where they will be with others of their own abilities. Where they’ll feel safe and secure and no longer have to try so hard to camouflage their disease. Where they can remain engaged, and possibly participate in new activities you never thought you’d witness.

Check back in a few days for my Part II to this blog.

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About Wendy Pester

With over 20 years of experience in the healthcare industry, I was fortunate to find my niche in senior care and have flourished as a devoted senior advocate. As a Community Relations Liaison, I have gained considerable experience working with those struggling with dementia and other medical conditions. As a Client Care Manager, I facilitate a smooth transition for clients being discharged from a hospital or rehab setting, working closely with the client’s medical team, family members and support team to ensure a safe, seamless return home. 
I am a Certified Dementia Specialist and a volunteer with the Alzheimer’s Association, facilitating monthly Alzheimer’s Support Groups in South Jersey, and provide one-on-one training and support to families of those struggling with dementia.

4 thoughts on “Can a Loved One with Dementia Live at Home? Part I

  1. Louise

    I appreciate some of the ideas in this article, but overall I thought it was quite negative about caring for someone with dementia (I am doing it now and am loving it). In particular, I can’t understand how the author can make this overly-generalized statement, “More importantly is accepting that if your loved one is no longer safe in their own home, they won’t be any safer in your home.” How can you say this as though it is gospel fact, regardless of the setup or resources? Nothing is mentioned about developing a routine with regular prompting that will help our loved one feel safe and connected and instill safe habits, even if they can’t make very good judgments overall, which is what happened with my mother. This structure greatly cut down on unpredictable situations in our household. Thank goodness my mother had a great geriatric doctor and other health professionals that helped us set this up. Anyway, my bigger point is that sometimes, depending on the level of dementia, dementia=care units are too restrictive for our loved ones whereas having 24-hour care can enable the type of 1-on-1 assistance not possible in a hospital setting and also allow for more independence because the home setting can be more customized. It doesn’t just have to be family that does the work either. My mother has home health insurance which allows us to have her go to a day program as well as have home health come in and give us breaks.

    Reply
  2. Louise

    And by the way, my home is a happy home, for both my husband and myself! We talk all the time how we are so glad we can do this and how wonderful it is to have this experience. It may not always be possible to care for my mother here, as you said, but I’m also aware of the negatives of nursing home and dementia care units that you choose to ignore and instead paint it as some kind of magic solution.

    Reply
  3. Wendy Pester Post author

    Dear Louise,

    Thank you for sharing your opinions and experiences. I am delighted that you, your husband and mother have had positive interactions thus far, and wish you continued success. Unfortunately, yours is not the norm. I meet with families on a daily basis who are caring for a loved one suffering with a dementia. Despite planning, routine, organization/structure and medications, the behaviors associated with dementia cause significant stressors for the entire family. Too often I witness the destruction dementia has affected between husband and wife, siblings torn apart by the level of care and attention their parent requires, and grandchildren confused and heartbroken by the behaviors. Not to mention countless hospitalizations due to in-home accidents. Very few seniors have long term care insurance, or the financial resources to provide for proper and sufficient in-home care, or an adult day program. I am glad that you are able to provide a safe, happy, engaging environment for your mother, and wish you well on your journey through dementia.

    Warmly,

    Wendy

    Reply
  4. Pingback: Can a Loved One with Dementia Live At Home? [Part 1] | Maria Shriver

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