Defeatparkinsons: Practical Tips for a Long Distance Caregiver : By ...

Defeatparkinsons: Practical Tips for a Long Distance Caregiver : By ...:             Recently with my dad's cancer rapidly escalating, I have had a crash course on being a long distance caregiver which I ...

Practical Tips for a Long Distance Caregiver : By Dr. De Leon

            Recently with my dad's cancer rapidly escalating, I have had a crash course on being a long distance caregiver which I was not entirely prepared for. Although, we knew his cancer was very aggressive and only diagnosed at  the beginning of the year, we were all very hopeful for a good prognosis and successful outcome. Since he was diagnosed being the eldest and physician of the family, I was automatically relegated the role of medical decision maker. 

Sometimes, when dealing with a loved ones chronic illness like Parkinson's or other medical or neurological disease, the choice of who will have medical power of attorney is not always as clear cut. In such cases a family meeting needs to take place as to who has time, understands  the patient’s wishes, and who will be available when the time comes to make necessary decision concerning health care issues concerning the loved one. The best person for this job, preferably will be someone who lives in  the same town or nearby and has a connection or bond with the patient already. However, is not always possible to appoint someone that is nearby or to be near our loved ones due to work or other professional and family responsibilities including our own illnesses.

As, I have learned  over this last year, taking care of someone from a distance can be extremely stressful for all involved, especially for the caregiver. I should know! I have gone back and forth to Houston at least a dozen times in the last month since father took  a turn for the worst. And even when I was not there physically, I was handling doctors calls at all hours trying to make decisions for my dad.

So, what can you do to prepare yourself should you be called upon to be the caregiver of a parent or loved one with a chronic illness like PD?

Here are a few tips to help make things easier for yourself and your loved one who is suffering from  a chronic illness and needs your support and help because they are too frail to care for themselves, or to sick to be effective advocates for themselves or have some other impediment like old age preventing them from achieving the best health care possible.

First, realize that this self less job is NOT going to be easy but well worth your time!.....

As the one in charge of my father's care, I have found that the hardest job of all is being his primary caregiver when I live far away especially when I, too, have a chronic illness to deal with (which is frequently the case for many caregivers....) or worst because we are living longer some of us senior citizens are being called upon to take care of  our even older more frail relatives ( parents, etc.). If this is the case take care of yourself first so that you can continue to care for others- you will be no good to anyone if you are ill yourself! After 2 weeks straight in the hospital, I had to take a small break to be able to recharge and be more effective at taking care of him and my mom. Learn to take needed rest to be more effective caregiver.

Being far away causes a type of inner turmoil deciding whether to move back closer, move your loved closer ( which is always the ideal but not always feasible due to many factors including socio economic and fact that person we are caring for mat simply be too sick and unstable to travel) to you. The other option is for you, the caregiver, to  travel back and forth  (as I have done)frequently to care for ailing loved one. Most often because of established family settings and careers of caregivers it is impossible to move closer to person in need. Learn to schedule time to spend one- on- one with loved one.

At same time, although  the patient maybe in need of  greater assistance they may be unwilling to admit and you must find a way to provide for them without insulting their pride or hurting their feelings. An open communication is the best policy in this case. Nevertheless, if they are of sound mind you have to respect their decision to stay in a familiar environment where they are comfortable and feel valued, even if you feel they might be better elsewhere. For instance, I thought my dad needed to go to  and would benefit more from a quick rehab stay to try to get stronger since he got so week during his nearly 15 days of  hospital stay. But, he refused and wanted only to convalesce at  home so we compromised and found a way for him to get the appropriate care that he needed at home so that he would be safe. Learn to compromise for betterment of loved one.

Being far away can sometimes be more overwhelming in dealing with a loved one’s chronic illness than being closed by. In many cases, the guilt and frustration of being far away and disconnected from the care of our loved ones leads to demanding and unreasonable expectations, advice, and demands for those that are around close to patient.(i.e. the team of health professionals and ancillary care staff).  These strong opinions as to what to do with mom or dad at times can only be counterproductive as well as serve at times to alienate those who are trying to offer help close by hurting the very feelings of the loved ones we are attempting to care for. So avoid walking in like a hurricane dictating changes to care plan established. This will only cause hard feelings and confusion in care. Learn to keep emotions in check and act on patients behalf always -portraying their wishes while addressing your concerns.

Also, try to be realistic in your promises. Don't promise things that might be impossible to keep like promising to maintaining them in their home  when they are alone, demented, or too weak to even perform normal activities of daily living. Express empathy and discuss concerns directly with loved ones. Learn what promises to make.

Being away sometimes does provide wisdom to see the big picture ...use this to your advantage. Be an advocate for your loved one. Sometimes they are too sick to speak for themselves or know what is going on around them.
Establish routines to help the infirm realize not only that you care but you are available when it is important. Learn how to be an effective advocate.

1) call home regularly- if  loved one is getting demented or elderly it helps to call them at  the same time -do it at  least once a week but should call more often if possible 2-3 x when people are chronically ill because things can change from day to day very quickly!
2) if possible, especially if live within driving distance at least a day's time visit at least a couple of times a month more often if possible. If farther away that requires long distance driving or flying think about going at least every 6 months.
3 )  help as much as possible; when you do visit, do not burden loved one by staying with him or her if struggling financially -stay at a hotel, buy food, try to pay some bills, perhaps they need extra supplies like pads if incontinent, ensure or meds that are not readily covered by Medicare etc.; if they have another caregiver there give them a respite while you take over.
4) when you visit loved one - make a point to go and meet with the physicians caring for your sick relative, establish rapport and encourage communication with you so they can let you know should there be any changes, questions or concerns. Make sure you have all the doctors’ phone numbers on speed dial and they should have yours in case of an emergency! if possible schedule doctors visits during your visit.
5) learn your loved ones needs and medication regimen as well as routine tests and doctors appointments so you can enquire about them to make sure they ( loved ones) are following through with care plan designed by their providers.

In the end remember, do what's best for your loved one...spend time with them and do not let cash flow or dysfunctional family dynamics get in the way of doing what is right for you & your loved one. The time you spend with them is priceless.
Handle with care- remember as Jim Rohn said; “ One person caring about another represents life's greatest value.”