Long Distance CareGiving

Here's the first installment of the material from the LD-CG talk I attended, shared with permission:

Presenter: Liz Gantzer, LSW, Community Relations Director, Duepree Retirement Community, Cincinnati,Ohio.

(She spoke of parents and older persons in general, but I will translate this to PWP of whatever age.)

GENERAL POINTS:

1. Importance of planning ahead--anticipating problems which may arise in future, not only in the progression of the illness, but in changes in the CGs life (illness, new responsibilities, etc.) which will make a difference in CG's availability.

   TOOLS to use:

   
   Make a record of important information, such as:

   PWP's Name, address, phone #

   Date of birth

   Social Security #

   Medicare #

   Other health insurance policy/number(s)

   Primary doctor's name, address, phone #

   Other doctors caring for the PWP

   Attorney's name, address, phone #

   People in family, or neighbors, who can be called upon to provide

   support--names, addresses, phone #s, including your own

   Information for reaching local police, fire dept., hospital--a local phone book is a help if you can get one.

   

   This should be where it is available to anyone needing it. If the PWP resists giving you this information, you might ask that they fill it out, and "just tell me where you will keep it" for use in emergency.

2. Be aware and accepting of the personality of the PWP. Never underestimate the strength of the desire/need to remain independent--a parent may even lie to his/her own children to this end!

3. Learn local resources--the local Area Agency on Aging is a good place to start. (It may have a different name, but all counties in the US have them.) There will also be an Adult Protrective Service (part of public human services agency) which can investigate if you have concern re: possible abuse or neglect of the PWP--you can call them anonymously.

4. The CG ( perhaps a hired person) who gives the most basic care may know the most about what is going on.

5. Try to find a friend, neighbor, or relative who will stop by weekly to check that all is OK.

6. Develop a plan in advance: list necessary tasks, spread responsibilities, consider the "what if?" possibilities.

7. When to be concerned:

   when there are changes in physical appearance (you may see them because you are not there all the time.)

   when the PWP is disoriented as to day/time,etc.

   when there are sudden,unusual changes in mood

   when there are changes in usual activities (giving up a favorite one, perhaps because of side effects of a new med, which you are unaware of)

   

1. Tips for Working With Your PWP to Gather Information:

   set aside time ( a special visit, phone call, etc.) to get specific information

   take advantage of natural opportunities (e.g. tax time for discussing finances)

   don't force her/him to discuss an issue at a particular time if you meet with strong resistance, but engage her/him in choosing a time to do this with you

   if he/she is into resistance, you may have to back off for a week--month--whatever is manageable, if it's not an emergency

   let him/her know you are gathering the information because you care and want to help--not because you want to put him/her in a nursing home, but to anticipate possible hospitalization or other emergancies

   

2. Key Long Distance Communication Skills

   listen for what is not said

   know that most people will" choose freedom over safety" rather than change their ways--it may take a crisis to motivate change

   acknowledge and accept feelings--they are real

   focus on facts, avoid judgement

   be aware of your timing--is it appropriate to what's going on now?

   plan your conversation in advance, but be flexible in how/when you approach sensitive matters

3. Exploring Language That Works

   in general try to use "I" messages, not "YOU" messages -- they will be less likely to make the person defensive.

   Examples:
   

   NOT "We have to talk about your bills right away!" -- BUT "When would be a good time to discuss finances?"

   NOT "You're always laying a guilt trip in me." -- BUT "I know you wish I could be more available to help."

   NOT "You always say you're fine, but you look bad." -- BUT "I'm concerned that you may not feel as well as you tell me."

You get the idea---the goal is communicating in a way that won't turn the other person off.

Involving the Rest of the Family--a Resource and a Challenge!

if folks are too far awy, have a "Family Meeting Conference Call" by phone. You might want to prepare ahead by sending out a written "agenda' or list of concerns to be discussed, so people are clear as to reasons for the meeting

schedule a meeting BEFORE there is a crisis

meetings may be regularly scheduled or may be called when ANY family member feels the need

when you can, and if medically/psychologically appropriate, include the PWP in the meeting, and be sure this possibility has been considered by all family members

hold meetings at time and place to enable as many as possible to attend

avoid allowing it to become a "gripe session" or time to rehash old grievances

treat all as equals, and listen to all suggestions and possible solutions

try to encourage "I" messages and reflective listening--you may need to "model" this through your own behavior

share information you have gathered--about possible new arrangements for example -- with everyone, including those absent

try to focus on the positive, and acknowledge the efforts others have made to help, while acknowledging areas of agreement and disagreement

divide responsibilities as evenly as possible, letting people express both willingness and limitations to take on responsibilities

handle conflicts creatively, with all involved

be sure to record and implement plans and decisions, sharing them with those who were unable to attend, with the understanding they will remain in force until the next meeting is held.

Additional comments of Liz Gantzer during the discussion:

it is hard to see changes in the pattern of the PWP's behavior if you see him/her infrequently--ask others for their assessment

family members keep their roles throughout life: if YOU were the kid who always picked up the dirty socks off the living room floor, YOU will likely be the CG!

many employers provide "elder services", information, etc -- check yours

one good thing about HMO/managed care is that doctors have to talk to each other, and it's harder for the "left hand" not to know what the "right hand" is doing for the patient

Comments, and additions from your experience, are welcome--share with the list, so others may profit from your experience!.

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1. Suggestion .....keep the "Information packet" with phone numbers/medication lists etc. in a zip lock bag in the freezer near the ice cubes and make sure that several people know that it is there.....a good suggestion for seniors or all who live alone......Almost everyone has ice cubes/refrigerator-freezer.... not lost in the shuffle of other papers.
2. Ask hard and serious questions of the friends who are willing to look after your parent/PWP......
   1. If they take her grocery shopping......what does she buy?
   2. Did you put the groceries away or did she?
   3. What was condition of food in refrigerator (is she eating?).
   4. What about canned goods......are they being used?

***Rita adds these sad experiences:

Friends were taking my mother grocery shopping for two years.....she bought fruit and twinkies when she went with them... occasionally some meat.....but several took her shopping....all thought that she was buying more when she was out with others. I arrived on LABOR DAY WEEKEND......two quarts of milk in the refrigerator.....one dated 4/7 the other 5/12!!!!!!!!!!!!!!! (This message was dated 6/11.) No one ever looked in the refrigerator to see what she had. Every can in the cupboard was expired, leaking, or spoiled.......how long since any canned goods were touched? What was she eating?

Reality: The friends were not in a lot better shape than mother....It took my sister and myself four weeks to clean out the house (garbage bags full of urine soaked sanitary napkins under the bed, in drawers....a problem of several years that no one was aware of....). No edible food in the house. Unable to handle own mail for 18 months...friend was writing checks for her...but did not tell us.....

DO NOT RELY ON FRIENDS without questioning them in GREAT DETAIL to find out how involved they are in her life... The house looked ok when people walked in...she kept the kitchen and the living room orderly....bedroom was ok, until you looked under the bed or in a drawer...lots of things can be hidden in drawers. Occasionally forgetting was all we were aware of in phone conversations.. and difficulty at times to concentrate.....

I strongly agree with the tips presented by your program......I would just urge those caught in this situation to demand cooperation with family from the friends who offer to "look after your mother".......they can in the end be a problem.... We are currently dealing with the problems created by our trust in these friends.."---Rita Weeks

(I would encourage additional feedback from others who have been dealing with this situation. ---Camilla)

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I don't know where, or if, this will fit into your comments.......but another thing we just became aware of with my Mother......(Mother lived in a small town which has become a part of Terre Haute and still had a local trash hauler rather than municipal services available)

We relied on the friends who were more than willing "to look after your mother".....However, this past week my sister was in Indiana and had face-face encounters with two other persons:

1. Trashman/garbage hauler -- who on several occasions last summer, found Mother outside at 6 am when he arrived.....she appeared disoriented, he helped her back in the house........but left being very concerned.
2. Lawn service man: last summer found mother with the car wedged in the garage, unable to get out of it on one occasion.......just sitting in the car in the driveway on several occasions........worried about her, helped as he could....

The comments from both individuals to my sister was...."I was worried about her last summer, but didn't know who to call or to contact." If possible, if there are individuals providing services who might be available for information....possibly insurance agent (home or auto).....are bills being paid in timely manner? Even utility company might be good to leave the name of a contact person with........

A thought just occurred to me: Possibly a sticker or note (BOLD PRINT, highly visible).......on the refrigerator door noting: EMERGENCY MEDICAL INFORMATION IN FREEZER.

(By the way the freezer suggestion came from Champaign-Urbana fire department which delivered empty pill bottles to elderly folks in the 1960's (we were in grad school in Urbana at the time)....the instructions were to use a rubber band to fasten the bottle to the refrigerator shelf with instructions/information folded inside.....the logic... Uniform location; the refrigerator seldom burns in a fire, and not lost in a shuffle of papers. We switched to the freezer and zip lock bags because it is easier to put the information into.) The cost of the Ziplock bags is minimal...make them available at support group meetings and seminars with index cards or xerox copies of pages inside:

1. CURRENT MEDICATION SCHEDULE:
2. CONTACT PERSONS in case of emergency:

   Family in town

   family out of town

   pharmacy

   doctor

   dentist,

   clergy

   insurance information

(This is also handy to grab when you are going to the emergency room......I keep a couple of quarters in the bag for parking meters and phone calls!.... 0 Rita

Note: I am so pleased that you are posting the information from your meeting.....this is such a timely event for us, it gives me time to really evaluate what did work (and what we could have done to make it work). Rita

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