By: Mara Botonis
The decision to arrange for others to participate in meeting your loved one's daily care needs is never an easy one. But often the primary barrier to obtaining increased care doesn't come down to overcoming feelings of guilt or even financial considerations.
In the families I've dealt with, there was a sense that after their loved one moved into a care community, the gradual erosion of the relationship with their loved one would suddenly be accelerated to the point that any hope of further connection would forever be lost.
Even when you are the face your loved one sees most often, the disease process may mean that recognition does begin to fade. It's only natural to worry that when your loved one lives away from home, in a different environment, or is cared for by other people, that this fading away may happen more quickly.
Below are some tips to feel connected and stay an important part of your loved one's life no matter where they are or who is helping with their care.
Share stories. You most likely sought care outside the home or hired professional care givers to come in because they possess an expertise with Alzheimer's and dementia that you feel would benefit your loved one. However, their expertise is with the disease not with the person.
Your voice is needed to communicate your loved one's history, preferences, likes and dislikes when they are no longer able to do so. This information is critical in assisting the care team meet daily emotional and physical needs.
As anyone with experience in dementia care knows, what worked one day can be totally ineffective the next. The more ideas and approaches you can share with your new caregiving partners, the more choices they will have as different situations arise.
Consider what is most meaningful. Think about the times during the day that you feel most connected to your loved one, the times or activities that bring you the most joy or satisfaction. Let the caregiving team know that you'd still like to be the one who washes your mother's hair, feeds your dad Sunday dinner, shaves your husband's familiar face, or plays your wife's favorite songs from the days you courted.
It's an all-around win-win situation as it's enriching for your loved one, meaningful for you and a chance for the caregiving team to take a little break.
Ask to be involved. Many caregivers are taught to let the family member(s) set the tone for how much or how little involvement they'd like to have in their loved one's daily life. Let the care team know the different ways you'd like to participate.
Are there opportunities to join a family council or support group? Do they need volunteers to help with special events and activities? Are they in need of any activity or other supplies that you could help with? Are there any special projects that you could assist with such as creating an edible garden or birdhouses that would benefit all?
Sometimes being a part of the community, family groups, or helping the care team can help fill the emotional void when visits with your loved one leave you wanting more.
Define communication expectations. Unless you ask for something different, many providers will contact you according to their policy and, usually, it's when there has been an injury, incident, emergency, or regularly scheduled care conference.
You may need to prepare them for the kind of communication you want and need ahead of time.
For example, write down your questions and let them know you'd like to check back with them in a day or so when they've had a chance to research the answers. This technique is particularly helpful when your questions are around things like medications, recent lab results, new physician orders, challenging behaviors, eating and sleeping patterns, weight gain/loss, or even interaction with others and level of enjoyment with recreational programs.
They will not only need to pull your loved one's medical record/chart, but will also likely need to consult with others to give you the most accurate information.
Create a routine. Many families have asked me after placing a loved one in a community which course of action is best: should they visit often or stay away completely in the early stage of the transition to help their loved one adjust? The short answer is neither.
Every situation is different and requires some flexibility as both you and your loved one get used to new routines. There is no "right" or "wrong" way to get through this phase. But a little planning can make it a lot easier.
Visiting every day, three times a week, or setting goals around the number of your visits is not nearly as important as scheduling based upon the quality of your visits.
Consider what time is best for your loved one... being there during meals may be a distraction rather than a help, for example. Maybe they have most of their energy in the morning, but are more anxious and fearful in the afternoon. When would your loved one most need your visit? When would your presence be most helpful in accomplishing care goals? And last but not least, when would you most enjoy your time together?
Trust yourself.No one but you knows what it feels like to love this person, to lose parts of this person to Alzheimer's/dementia and to suit up every day even when it takes everything you've got to continue to be there for someone who may not even remember who you are. What matters is that you remember who they are.
You remember all of the great, funny, sweet, silly and sad moments that make up your shared history and however you choose to honor and protect that is up to you and only you.
Excerpted with permission from When Caring Takes Courage, A Compassionate and Interactive Guide for Alzheimer's and Dementia Caregivers
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