In my last post, I offered some tips on how to start speaking up for what you need and what you want. Of course, one could write a book on the subject (and maybe I will someday)! Within the confines of blog posts, however, I suggested just a few simple steps you could take to start speaking up.
To me, as a caregiver for an elderly parent with dementia, speaking up is an essential skill for regaining some control over your universe. Here are some examples where knowing what you want and speaking up for it can be really helpful.
Medical Matters, including doctor visits, ER and other hospitalizations
Have you ever been in the situation where, after the doctor leaves, you scratch your head and ask yourself, "What did he just say?" Medical matters with regard to elderly parents are always complicated. Typically there are multiple medical issues to consider, various treatment possibilities to understand, a variety of drugs influencing each other, not to mention the anxiety of seeing one's parent in pain or distress. Physicians have less and less time, and sometimes too little patience, with geriatric cases. I've found this can be true even with doctors who claim a specialty in geriatrics.
Being able to speak up in medical situations is difficult, but crucial. Here's how I break this down into the rock bottom need and want:
What do you want? to understand the medical matter confronting you.
What do you need? for the doctor(s) to explain the matter to you clearly and completely.
How do you get this? Present what you want simply and nonjudgmentally. For example:
"Doctor, I am my mother's principle caregiver. I want to be able to make the right decisions and to do that I have to understand the medical issues confronting us. Could I ask you to explain the situation to me as simply and thoroughly as you can, so that I can understand it? And please bear with me if I need to ask some questions. If this isn't a good time to go into the detail I need from you, can we set a time right now when we can talk about this?"
Family matters--time for yourself
One of the recurring themes in caring for elderly parents is how it encroaches on your time. and energy for other things. You're working, you're raising a family, you're keeping your spouse happy, AND you're now responsible for all sorts of things related to your elder parent's well-being. If you don't speak up for your needs you'll eventually explode and one of the above will suffer. Here's how I break this down into the fundamental want and need:
What do you want? Not to be responsible to anyone for anything for a period of time (a night, a few hours, whatever works for you)
What do you need? For your spouse to take over your chores for that particular period of time.
How do you get this? Try this out: "Honey, I want to be able to take care of everyone and keep up with all my responsibilties as well as I possibly can. You know that's really important to me and I take it seriously. Right now, though, I'm truly exhausted by it. I need a break. Could you (take care of the kids for the next few nights) (manage dinner for me this week) (take over the laundry this weekend)? If I just don't have to think about or be responsible for this it'll help me more than you can imagine!"
Ok, ok, maybe you won't call your partner "honey" but you get the idea!
Have you encountered any situations where these ideas could help?
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6 comments:
Great blog, Dina.
In reading many of your comments, I found myself remembering when my father was suddenly so ill and incapacitated, a state in which he remained for exactly one year before he died at age 86. I was a single mom with two young kids and a full time job; my parents lived an hour's drive away; neither brother lived close enough to help out, and I had no other family to help. A classic sandwich situation, complete with all the accompanying stress. Here were a few things that helped me tremendously:
1: trusting my gut feeling regarding doctors, placements, diagnoses, etc. Simply put: when unsure about who and how my dad was being cared for, I had to have faith when it felt right (getting clear, concise answers; a sense that the caregiver was going to be thorough and caring when following through; literally, truly good eye contact) as well as lobbying strongly for change when it felt wrong (insisting to my too-trusting mom and brother that we had to get him OUT of the horrible temporary nursing home arrangement - NOW.) This was necessary because I simply could not be there. We're smart and we know our parents, and we really do need to listen to our own inner voices and act, either way, on our own excellent insticts.
2: - feeling gratitude and not being afraid to ask for help, from anyone you can. My beloved friend Jan took my two children once, on ten minute's notice, from about 7 AM until after midnight that night: and even fed me a spaghetti dinner with a much needed glass of wine. I won't ever forget it. And I would move mountains for Jan if she asked me to.
3: - Be creative; outside the box solutions can suprise you. I felt frustrated recently that my mom (in independent living in a senior commnity) was overwhelmed by clutter, her wardrobe, and her two cats. And it's still nearly impossible sometimes to get to visit her to help. Together we decided to ask her once a week housecleaner if she would like a few extra hours each week to help my mom with odd jobs (seperating out stained blouses she could no longer see; cleaning that wretched cat box, washing off the outdoor furniture). Everyone was happy: my mom liked the company, Vanessa liked the extra $$, and I was relieved that she was living less chaotically.
Lastly - having the support system of friends near and far (like the Rocky mountains!) to talk to - has immeasurable value. So thanks Dina, for coming up with this idea.
Betsy
Hi Dina.
I could use some advice. My siblings live within fifteen minutes of my elderly folks, and I'm a thousand miles away. What are the best things I can do to support my siblings as they provide on-site assistance to my folks? Thanks for any suggestions you have.
Re. what you can do to support siblings who are doing the "heavy lifting" since they live near your parents: Following are a number of things you can do to share the work with your siblings. that they can't get elsewhere. These are some practical actions th you can take on which don't require living next to your parents. THe first step, though is, if you're not already, then get actively involved with your siblings by phone and/or email. This means participation on several levels:
1. Make yourself into the the one who will listen to and empathize with their gripes and grumbles. Sometimes it just helps having someone in the family to vent to. You'll find if you offer this to your siblings you'll start to get an earful!
2. Work on learning when they just need someone to vent to, and when they're calling you for advice. My sister is good at reminding me that she's not necessarily asking me for advice all the time. Not every phone call is one that needs a solution. Sometimes a call is just to have a sympathetic ear that knows the whole story.
3. Make sure your siblings know that you want to be included in talking things through with them. If they're not used to this, they might initially feel that it's just adding to their work to have to call you. Not true! You can be amazingly helpful as the sibling who's not in the day-to-day swamp of care. You care deeply about what's happening, but you're the only one in our family who can take a less emotional, more objective view of what's happening.
4. If you think your siblings don't know that you want to help out more, you'll have to make that clear to them. Since you're too far away to have a family gathering, I suggest an email to all of them telling them what you think you can start to do that'll help. If any of them don't have email, call them and explain what you want.
5. Take care of your parents' paperwork. Like you, I'm the sibling who lives far away and so I've taken on paying my mother's bills and I manage all insurance matters (health, AARP, MedicareRX, property, LTC, caregiver invoices).
6. Make charts, lists, records that'll help your siblings. Collect all drug info and dosages and keep that current. Do the same for all your parents doctors. Make a list of what medical appts are needed when and keep it current. Keep the details of hospitalizations, including where, when, for what, how long, etc. Having all these details up-to-date and accessible is a fantastic resource.
7. If it's possible for you, set up a regular series of visits, during each of which you'll be give a sibling a break, i.e., they go away, or they get to completely absent themselves from day-to-day care while you're there. This is work for you and a great stress reliever for them.
8. Ask your siblings how you can help them. This may seem obvious, but if you've never raised the question, or never said that you want to find ways to share the burden, they may not know.
I find that the most important thing is to remember that while what you're doing is different, it's still really important.
Betsy, What you recount about your experience is so important, not just for us caregivers, but for those on the outside looking in who wonder what they can do to help us. I found your suggestion about not being afraid to ask for help is especially poignant. It made me think that, if this is difficult for us to do (and it is!), then just imagine how our parents feel knowing that they are so dependent on us and need endless help from us.
GOOD MORNING DINA,
I HAVE AN 87 YEAR OLD STEPFATHER AND A 72 YEAR OLD NEIGHBOR THAT NEED A LOT OF HELP.
MY DAD LIVES IN FLORIDA FOR THE WINTER MONTHS AND WISCONSIN FOR THE SUMMER MONTHS. THIS YEAR HIS DOCTOR GAVE HIM A MENTAL EVALUATION AND SAID HE DIDN'T FEEL HE SHOULD LIVE ALONE ANY MORE. HE DEARLY LOVES HIS WINTERS IN A SENIOR MOBILE HOME PARK AND WANTS TO LIVE THERE UNTIL HE'S 90. SO WE DECIDED IF HE COULD DO THE THINGS A HOSPITAL REQUIRES TO GO HOME ALONE THEN HE COULD GO BACK. THE NEIGHBORS IN THE PARK WATCH OUT FOR EACH OTHER AND WOULD CALL RIGHT AWAY IF ANYTHING WOULD HAPPEN. SINCE I'M RETIRED I COULD BE THERE IN A DAY IF NECESSARY.
I TOOK OVER HIS FINANCES AS THAT WAS THE AREA HE HAD THE MOST TROUBLE WITH.
HOSPITAL REQUIREMENTS ARE
1- GO TO THE BATHROOM BY YOURSELF
2- BATHE YOURSELF
3- DRESS YOURSELF
4- COOK AND FEED YOURSELF
5- WALK UP AND DOWN STAIRS
6- TAKE YOUR MEDICATIONS CORRECTLY
HE CAN DO THOSE THINGS AND STILL DRIVES A CAR BUT HE GETS CONFUSED WHEN IT COMES TO NUMBERS AND DOESN'T REMEMBER WHAT YOU TELL HIM ABOUT A LOT OF THINGS.
MY DAUGHTER FEELS HE SHOULD BE UP HERE IN ASSISTED LIVING AND I'M INTERESTED IN WHAT YOU AND OTHERS WHO READ THIS THINK. JUDY
Hi Judy,
It seems from what you describe that your father's not ready for assisted living, though he's heading in that direction. Keep in mind that, in this situation, there's no absolutely specific, definite point when someone goes from unassisted to assisted circumstances. It's a gradient, a continuum. The point of moving to assisted living is determined as much by your own comfort level with your father's abilities as anything else. You'll find that when you're no longer comfortable with your father living alone, there will still be some functions going great and just a few (but an important few) that would benefit from daily monitoring or assistance.
It sounds like you're doing a good job keeping tabs on him through his neighbors and friends. As long as he's in Florida on his own, you might consider ramping that up, with your neighbors' buy-in. If they're willing to be your eyes and ears, you can talk with them regularly and get a clearer picture of whether your father's maintaining or deteriorating. Above all, don't rely on your father to apprise you of problems. He may be embarrassed to relay difficulties, worried that if he does so he'll lose his independence or simply may not remember that something's gone wrong.
In the meantime, there are things you can be doing so that when it is time to move your father, you're both ready. I've addressed this in some detail in : a new post
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