In my 20+ years working in memory care I have counseled (countless times) spouses and adult children who are paralyzed with guilt over the decision to move a loved one into a memory support community.
To assuage their guilt, some families engage their loved one in the decision-making process, no matter how far along their memory loss is. Some try to get their loved one to make the choice themselves, thus relieving their burden. Virtually all hope their loved one will agree, move without a fight, and even embrace the move as a positive step. (This is often unrealistic.)
I worked with one family who brought their Dad for numerous tours of one of our Memory Support Neighborhoods in an effort to include him in the decision. He wasn’t safe living alone in his home. They wanted him to have more care, more personalized attention and more opportunities for socializing. But they just couldn’t pull the trigger – their guilt paralyzed them.
If you relate with the description above, you are not alone! I can’t think of one family over the last 20 years that hasn’t experienced guilt about moving a loved one into memory care. But I always counsel people to move ahead despite their guilt.
Why making a decision is the right thing to do
Dementia causes impairment in decision-making. The majority of seniors with dementia we see also have impaired safety awareness, which is the main reason leaving the decision up to them is unreasonable. So, family members really do have a responsibility to make the right choice in the best interest of their loved one.
It may be helpful to think of moving your loved one to a memory care program in this light: If your child came to you with a swollen and bruised arm you’d likely take them to get an x-ray. If the x-ray confirmed the arm was broken you would expect the doctor to provide a treatment plan, including managing the pain and ensuring the bone would heal properly.
The bone is a euphemism for dementia. You would likely feel guilty if you didn’t follow a treatment plan to heal your child’s broken arm. You should feel the same about your loved one with dementia. The right setting that focuses on your loved one’s individual needs is a step up, not a step down. You are doing what is right for them at this point in their life.
Consider the deteriorating healthcare status of caregivers
Often, through the early and mid stages of Alzheimer’s, the care falls upon the spouse. If you are an adult child you have a responsibility to do the right thing for your “well” parent, not just the parent who has dementia. If you are the primary caregiver, you understand the toll caregiving takes. According to the Alzheimer’s Association nearly 75% of Alzheimer’s and dementia caregivers are somewhat or very concerned about maintaining their own health. The daily physical and emotional stress of caregiving should be a crucial factor in your decision making process. Need more convincing? Take a look at this fact sheet on caregivers & Alzheimer’s.
Should you involve your loved one in the decision?
When you think your loved is CAPABLE of decision-making: This is difficult. Your loved one is already facing deficits, limitations and fear for their future decline. Naturally you feel guilty about forcing one more change in their life. If you are an adult child, no matter your age, it can be hard to tell a parent what they should do.
Research results from interviews conducted with people with dementia and their families in England concluded. “Some preferred their family to decide for them but others felt excluded and even humiliated by not being included. The people with dementia reported a strong desire to continue living in their own homes. Carers recognized and echoed this desire. However, concerns around the safety and ability of people with dementia were often such that it was not possible.”
If your family is having difficulty initiating conversations or getting stuck about future planning, you can get a professional involved. Your loved one’s doctor, another healthcare professional, a geriatric care manager, or a memory care expert at a local community can be your ally. These professionals can explain to your loved one in a calm and authoritative manner why memory care is a positive move.
However, depending upon where your loved one is at in the disease process, following the pep talk they will likely get home and forget the conversation. They will then be resistant all over again when the subject next arises. This approach can actually lead to a merry-go-round effect that exacerbates your guilt and feelings of helplessness, and your loved one’s anxiety.
When your loved one is INCAPABLE of decision-making: The study noted above also concluded that decisions about placement were often made at a point in the illness when the person with dementia had a lack of understanding about the issues necessitating a move. “Consequently, people with dementia were sometimes unable to contribute fully or at all in the decision, whilst carers felt overwhelmed and distressed.”
If this is your situation, move ahead. You have to balance the benefits of a familiar environment with the need to reduce unacceptable levels of risk or accidents at home. You also need to take into account the many benefits of a memory care setting, such as personalized support and stimulating programming that can reduce anxiety and promote joy for your loved one. At my company, Senior Living Residences, we have a full treatment plan in place covering nutrition, exercise, programming, and more.
What comes after the decision is even more important
The decision, whether you have your loved one’s agreement or not, is just the first step. Please don’t get stuck here. Getting your loved one to actually come through the doors to a memory care community is where they struggle.
You can rely on the professional staff at the memory care community to guide you. They are trained to support both your loved one AND your family through this process. These experts know how to help you deal with your guilt. They will also guide your conversations with your loved one to minimize their anxiety about an upcoming move, as well as ensure a smooth transition into their new home after the move.
Whether your loved one has a smooth or difficult transition, they WILL get used to their new home. Ultimately, the vast majority of people who move into a memory care community come to love their new home. They form close relationships, bask in the attention paid to them, participate in daily exercise and programs that keep them engaged in life, and eat well and receive personalized care to maintain their health.
Remember it will get easier when you find the right community!
Many, many families have been in your situation. As hard as it seems right now, it’s important to know that it will not always be so.
From experience I know that living in a well-run memory care community that focuses on treating the symptoms of dementia with innovative programming actually helps slow the progression of dementia. Once you find such a community you will truly understand and appreciate the importance of professional intervention and care for your loved one’s specific cognitive needs, not just care for their physical needs (which is what family carers provide).
Just remember that with all of the benefits that a memory care community can provide, you will ultimately feel good that you made the right choice for your loved one. You will come to understand that you didn’t just take them away from their home. Instead, you will see that the right setting can improve their quality of life. You will have given them a gift – the care and lifestyle they deserve that will boost their well-being and happiness. Believe me, this will be a powerful antidote for your guilt.