Ensuring that your loved one receives adequate care to meet their increasing needs is likely your overriding priority, even if that comes with the potential for some additional hurt and grief.
By Mara Botonis
Alzheimer's Reading Room
The decision to arrange for others to participate in meeting your loved one's daily care needs is never an easy one. By and large the most common concern I’ve heard from families who were considering facility placement or the hiring of in-home primary caregivers may surprise you.
Often the primary barrier to obtaining increased care didn’t come down to overcoming feelings of guilt, or even financial considerations -- instead it was something harder to articulate and even harder to overcome. There was an inexplicable 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.
The fear that what remained of a once powerful bond would slip past the point of recognition to be retrieved again only in frozen moments captured in old photos or relegated to the occasional retelling of family stories. Those feelings are real. Those feelings are completely understandable.
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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. However, ensuring that your loved one receives adequate care to meet their increasing needs is likely your overriding priority, even if that comes with the potential for some additional hurt and grief.
Below are some tips about how 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. But, their expertise is with the disease not with the person. There is no one else who knows your loved one better than you do and you’ve had a front row seat with which to view and be an important part of their life story, their biography. 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.
- Give advice. It’s okay to share with others your caregiving successes, routines and preferences. You've been at this a while and as anyone with any 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 when needed as different situations arise. They may already know about the disease process, but they are just learning about your loved one so your tips and suggestions should be met with appreciative ears as they work to establish their own relationships and schedules with your family member.
- Consider what is most meaningful and then share your own needs. Be honest about what you need from this experience. Most primary caregivers are excellent at communicating what they feel their loved ones needs are, but many have gone so long without making their own well-being a priority that they may not be accustomed to thinking about what they need and want.
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. Letting the care team know that this means a lot to you can help them create space and time for those experiences to continue. It is 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. When it comes to coping with the effects that Alzheimer’s and dementia have on family life, each person is different. Even members of the same family may choose to handle the changes in their loved one and their shared relationship very differently. 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 bird houses 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.
- Set regular care conferences and meetings. Most care providers have minimum expectations set by the state or other regulatory agencies as to the frequency and type of formal communications with family members regarding the scope of care, current challenges and changes in the care plan. Be sure to make it a point to schedule these regularly (most are monthly, quarterly or when there has been a significant change in condition) and ask for copies of the care plan or written notes for your reference.
These meetings (different than the kind of calls that report an incident, injury or emergency) are an important time for everyone who is a stake holder in your loved one's care to come together and collaborate on the best possible care solutions as your loved one's needs change.
- Define communication expectations. Unless you ask for something different, many providers will contact you according to their policy and usually as noted, it’s when there has been an injury, incident, emergency or regularly scheduled care conference. Whether they care for multiple patients, or just one, the shift of a caregiver is full of unpredictable surprises and constant demands for their time and attention. You may need to make it a point 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. You may also want to let them know in advance the kinds of information that you’ll be asking for most often.
For example, do you want to know how your loved one has been sleeping? If they participated in any activities? When they are almost out of their medication if you want to be the one to refill it? Each time a physician or consultant has been contacted? Letting the care team know what’s most important to you can help them respond to your queries more quickly.
- Schedule visits and create a routine. It can be overwhelming to adjust at first to the difference between being “on call” 24 hours a day, every day as the primary caregiver, to all of a sudden having a choice between how you help and how often you help with your loved one’s care. Many families asked me over the years, 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.
You should know that there is no “right” or “wrong” way to get through this phase. But, a little planning can make it a lot easier. Get a calendar out and take a moment to think about what you want the first few weeks of this transition to look like. Schedule time to be together during the hours that are most meaningful or important (meals, activities, or doctor’s appointments). This is where that old saying about quality time versus quantity time really comes into play. 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 you be more likely to get the most out of your time together? When would your presence be most helpful in accomplishing care goals? When would you be best able to contribute to your loved one’s life enrichment? And last, but not least, when would you most enjoy your time together?
- Trust yourself. Give yourself permission to visit or participate in your loved one’s care on your own terms without fear of judgment internally or from others. Some days will be harder than others, some decisions and duties you’ll need to carry out will be tougher than you thought while others will be surprisingly rewarding just when you need it most. It’s okay to embark on this in your own way. That’s the only way to do it.
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.
Don’t let your idea, real or imagined, of other’s expectations dictate the course of a journey that only you alone know how to travel. Trust yourself. Step back when it hurts too much, come closer when you are strong enough and be there when you are able to savor every moment that unexpectedly brings back that familiar smile, that well-known twinkle in the eye or the touch of a hand that reminds you of that which will never be forgotten: that Alzheimer’s disease may have changed the love you shared but it will never, can never, doesn’t have the power to ever, erase it.
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