People who support and care for loved ones with dementia experience many ups and downs throughout their caregiving journey. It can be heartbreaking to watch someone they love decline and become someone that they no longer understand or recognize. While some become easier to be with, others may become increasingly difficult, and of course there is everything in between. There can definitely be the best of times -- and the worst of times.
Either way, the demands on the caregiver can become overwhelming and lead to the ultimate decision to put the person with dementia on a waiting list for a nursing home. While that initial decision to place someone in a nursing home is, for many, nothing less than devastating, the decision may be rationalized as being somewhat like a safety net: the name is on the list should we ever need it. Central to this discussion is the fact that caregivers must be reminded to look after their own needs -- not just the needs of the person in their care.
For some, there may be great comfort knowing that this decision has been made, but there is also comfort knowing that the nursing home placement is not yet real. Guilt prevails for those who promised to never put their loved ones in a home.
However, the reality of the situation takes hold, and loved ones often come to terms with the fact that nursing home placement is (or may be) the best decision for all involved.
Now they wait, often feeling quite conflicted -- or quite satisfied -- that their loved one is "on the list." However, they may not be expecting the amalgam of feelings they encounter the day the call arrives.
Perhaps one of the most difficult days in the dementia caregiving journey is the day that one receives that long anticipated call:
"We have a bed available for _____. You will have to make a commitment to the bed within the next 24 hours. Do you have any questions?"
This is good... right?
The first question that may come to mind is, "Are you kidding?" While some caregivers are ready to do a happy dance, others may feel blind-sided, and some will encounter a mix of both of these reactions. The reality of the situation, for many, may make their hearts sink.
This is good... right?
Where are the supports for loved ones at that dreaded moment that the call arrives? Quite frankly, most people say that no one truly understands that moment unless they have lived it.
If you are in the situation of caring for a loved one and have made a commitment to placing a loved one on a nursing home placement list, be prepared for the vast array of mixed emotions that might arise when you get that much awaited (or dreaded) call. While you may look forward to lightening the burden that has accompanied your caregiving commitments, you may also feel a deep loss, much like grief.
You may also feel guilty, because you feel you should be doing more, or you should never have agreed to the placement in the first place. Go easy on yourself. Caregiving statistics clearly show that the physical and mental health of caregivers can decline while caring for those living with dementia.
Balance is key. Once your loved one is placed in a nursing home, you can begin to take comfort in knowing that someone else will take over the many tasks that you have been looking after each day (ranging from dispensing medications to assisting with tasks such as bathing and toileting). You can now turn the focus to leisure interactions -- not just the tasks.
Your job has not come to an end. It will just be different.
Sharing the news can also be difficult. Very few will say, "Wow, this must be hard on you." Rather, you will hear, "Oh! Isn't that great! You will have so much freedom now!" What many don't realize is that you may be devastated, as this is a final stage, a prolonged goodbye.
You may also fear the unknown. Will this facility be willing to provide the care you have provided? Will your loved one be unhappy, or even angry? Loved ones who embrace the news with joy are to be commended. It is important to let go and realize that others will take over the tasks that you so lovingly have undertaken. Your job has not come to an end. It will just be different. If you are grief-stricken, find people to talk to that will validate how difficult this is.
Some of the comments I have had from people who placed loved ones in long-term care follow.
"That was the most difficult day of my life. It was even harder than losing my father."
"My grandmother lived with us before she moved into a nursing home. When we got the call my mom and I cried for days. We did all we could to support her but after years of putting out fires (literally), protecting her from many dangers - we had no other choice. We made her first days the best days possible. She was happy when we left her, but we cried. Now, months later, we are happy to know she is safe and happy, and that is all that really matters."
In closing, I want to say that although the move to a nursing home may be difficult, most people do settle in and caregivers eventually adjust to this new, and difficult, change in status. If you need support, reach out to your community to learn more about support groups (such as the Alzheimer's Society).
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