The Long Distance Caregiver

Navigating Your Own Needs When Others Are Caring For Your Elderly Loved One 

Many books and articles have been written about how to assist your elderly loved one through the transition to living in a new environment. Those moves may be across town, a state, or in some cases on the other side of the country. But there is far less out there about the transition to becoming a long distance caregiver. Often you are not able to visit for a number of reasons.  Where does that leave the emotional part of YOU?

Very little time is spent focusing on the toll it takes on the child, close friend or others when they no longer have access to their friends and family as they once did.  There are so many moving parts during these transitions that some of it becomes mechanical,it’s a ton of confusing work and maybe feels desperate even.  When the dust settles…there is a lot to this new normal.  It reminds me of some couples planning their wedding. Another transition time of life. The time and effort, the work that goes into it can be tremendous….but some forget to plan and nurture the actual upcoming MARRIAGE part, and are in for a shock once the rice has been swept up and the honeymoon is over.

 

Communication Takes On New Forms

You may have to rely on others to assist with what was once as easy as dropping in to say hello, and it might take time for it to go smoothly. Caregivers, a sibling, administrators and outside health agencies may be your advocates and your helpers for communication going forward.  Some relationships, sometimes with siblings, can be strained during this time especially if not everyone was in agreement with what is happening with Mom or Dad.  Try to make a point of keeping that separate from the information funnels you create with them.  Let it be known that you may still disagree on details, but during all communication regarding Mom or Dad’s healthcare and happiness that YOU will not bring up controversial topics. (For example, financials, past decisions you did not agree with, which Grandchild gets moms ring everyone wants)
For some, a set time and date such as a phone call or video meeting weekly that is only discussing the health and happiness of your loved ones is agreed upon to be separate from other conversations that might become heated or break down communication.  Some find it helpful to agree to say a prayer before beginning all conversations that might involve sensitive topics.  If you are able to visit the new arrangements, chat up the staff and those your loved ones will be in contact with often.  Using their names when talking with Mom will let her know you are involved.  The Activities Director is another  gem that you should do your best to speak with in the beginning of the new arrangement if one is available. Yes, there are intake forms that will ask for social history and activity history, but so much more can be gleaned with a conversation to the activities department.  They want to know not just what Dad can do or wants to do now, but what made him into who he was in his prime?  Was he a huge fan of the Paul Harvey Radio program? Did mom used to love to go dancing when she was young even though she does not seem to be able to now?  You would be amazed at how that information will assist the caregivers to help your loved one as time goes on. That is a great way of long distance care-giving as well. Many activities directors will make a point to include activities targeted at your conversations and in turn, it gives you an opportunity to feel involved.
I’m going to make mention of a new technology that is a little pricey, but a wonderful way of letting your loved one know you are thinking of them. Friendship Lamps change color in sync to show when you are thinking of someone. Whenever you touch them, they will change colors in both homes. You will need wifi at both locations and they typically run between $80 – $100 a piece. There is a wonderful heartfelt feeling you get when the glow of the lamp changes color in your home and you know that you are being thought of at that very second. That is quite a wonderful use of technology don’t you think? One last thought on communication. Be sure to tell Mom or Dad what you have done to keep them in your daily life. Tell them about the new photo frame you just purchased and placement near your bed of your favorite photo of them. Inform them that not only are you are so thankful for the items they gifted you when they downsized but  tell them every time you use one of those items.

Know Your Resources 

 Now days, every pregnant mom receives the book, What to Expect When Your Expecting, from either a doctor or a friend.  It outlines each month the way the changes of the pregnancy will affect you and the growing baby.  How marvelous would it be if the same were true now at this stage in life with your loved one?
 “Oh Congratulations Mrs. Smith, your Dad is in a assisted living facility with vascular dementia. Here is a book that will answer most of your questions, and a bag of nifty gifties”. Unfortunately that’s not going to happen anytime soon.  Navigation resources should be written down for easy access and time set aside to educate yourself on the next steps in elder care.  Some steps are predictable and others vary widely. Your peace of mind will be edified the more you learn. Ask for a copy or download a copy of the Residents Rights.  Every state has them and it’s great to know what they are up front. There are many misunderstandings of what is an actual right and what is a policy that is actually legal.
Find their local Ombudsman. They are a local official who handles the representation of the interests of the public. They investigate and address complaints of mal-administration or violation of rights. Typically they are in facilities at least one time quarterly on behalf of the residents, you the family and the public interest.  Keep their phone number in your phone. Be sure to share with them wonderful things you see happening as well as any concerns you feel need to be addressed if the administrators have failed to resolve them.   You can ask the administration team for the ombudsman’s information,  many times it’s hanging up in the facility.  
If dementia is involved, there are two things I would do right now.  Order the book, The 36 Hour Day and then look up Teepa Snow videos on YouTube and subscribe to her channel. Teepa has an unbelievable way of making sense of dementia. She’s able to answer questions of  how to handle and respond to dementia and why it’s happening.  She’s a doll too with a good sense of humor. Teepa also does live videos where the audience can ask her questions in real time. The 36 hour day is a easy read that I have seen open the eyes and bring a sense of , “Ok…I can do this” to someone that just days before was at a complete loss of how to go forward.  Dementia care is a whole new world. Introduce yourself to it through trusted resources will build your confidence and that of the team supporting your elderly loved one.
Know that there are multiple hospice agencies available in most areas and some are better fits than others. It’s never to early to talk about hospice. Hospice does not need to be a scary thought. Just like planning your funeral in your 40’s! It makes sense to get that stuff taken care of when everyone is calm and not really thinking you need it soon. Interview the different agencies. Ask lots of questions! Ask to speak to their chaplain and then ask who they enjoy working with and why. A true sense of peace is possible. Information is PEACE! Many chaplains have commented that fear of the unknown is what keeps people from feeling peace during their aging years. Checking off the uncomfortable subjects can take away some of your fears and those of your senior loved one.
 

Get Support- It Is Important

Join a social media support group. There are many out there with loads of support, venting options and answers. They can share real life answers to questions like; “Who can help me with sell my elderly Mom’s home and not rip me off?” “Who pays my senior parents taxes if they can’t?” “What are my options to be sure my senior parents are safe?” Some of the most brilliant ideas in senior care I have seen have come from family members in these groups. Even if you are not a “Facebook” person, this might be a good reason to become one. 
 
Keep in contact with your loved ones friends, even if Mom or Dad can’t anymore. If you have people in your life that will laugh with you and cry with you, don’t lose them now. Pull them in closer, even if it’s just writing a letter now and again. Be sure to convey to them any progresses and good news you have about the mutual loved one. Caregivers light up when they get to read letters to the residents from an old friend. Especially when they share an inside joke, memory or treat about the resident. If you are staying in contact with their friends, chances are they will too.
The Alzheimer association trains facilitators nationwide to run family support groups.  This is helpful even if your loved one does not have dementia.  You can attend one in your local area. It’s not necessary to attend in the area your loved one resides in. Their website is also full to the brim with helpful information in elder care.  
 
Finally, you need to understad that your response to this step in your loved one’s life will not be perfect. Is that really even possible? But moving forward you can be involved at any distance! The resources above and a plan will help you feel educated and empowered. Taking the time to read this blog is a great step forward as well!
“This stage of life deserves as much beauty, care and respect as other parts of life, don’t you think? “- Unknown author
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