What is Self Care?

Many of us believe if we put our needs before that of our loved one, we are being selfish, egotistical, or self-serving. That may be the case if you are neglecting your loved one, but not if you are preserving your health and/or well-being, in order to better care for your loved one.

I've stated it many times; you cannot be a good care provider if you do not take care of yourself first (or, if you prefer--along-side--your love one). I will admit I am a better preacher than I am a follower of my own advice. The old adage, "do as I say, not as I do" (or, don't, in my case) are often more true for me than taking care of my physical and emotional needs on a daily basis.

Because of my own propensity for leaving my needs till last, I can completely identify with those of you who put yourselves on the back burner while you're caring for you loved one.I'm here to tell you it isn't worth it. You won't gain anything by leaving your health (physical or spiritual) "till you have time". It won't save you any time or energy, and it might even cause you to be out of commission for a longer period of time, having to hire someone else to care for your loved one. You certainly don't want that! If you do not take care of yourself, you might end up in any number predicaments that could cost you dearly.

"Practice what you preach" is my new mantra! Sometimes just looking at the issue differently, or calling it by another name, is all it takes to make me feel less guilty for what I perceive as selfish. My sister and I were talking the other night and she mentioned "self care". I like that label. Self care is something I do for myself so that I can be a better caregiver to my loved one. Taking care of my needs and necessities for physical health and spiritual well being is not wrong. In fact, its exactly what I should do regularly, not only for myself but also for my loved one.

I know its difficult when your day is full of caring for your loved one, taking him/her to doctor appointments, fixing meals and other necessary tasks. Fitting in a doctor appointment or spa treatment for yourself is often problematic and challenging. But I can tell you from experience, being out of commission because of a stroke or some other health issue is far worse and certainly more time consuming.

So, I promise to do better at self care, if you'll promise to do better at self care. Let's strive to be the best caregivers for our loved ones (and ourselves) as
possible!

The Bigger Picture

One of my pastors at the church I used to attend (Jon Talbert), relayed this story of a checkers game he had with his then, young daughter.

Jon was playing checkers with one of his daughters and his strategy was puzzling her. He would play piece after piece that he knew she would take. She continued to gloat each time she took one of his pieces, all the while wondering why he was letting her “win”. Then in one swift move, Jon jumped 5 or 6 of her men in succession, and took the piece farthest from his side of the board, placing himself into the hot spot and very proudly proclaiming, “Crown me king!”

Jon’s daughter couldn’t see that with each sacrifice he made he was moving closer to the prize, closer to winning the game.  Jon could see the big picture but his daughter couldn’t because she was too focused on what she was doing and how she was going to get what she wanted. If she had just looked up from the game, stood back and realized the whole picture, she might have been able to strategize differently.

In our caregiving efforts, we cannot always see the entire picture of what the job has to offer us. We simply continue to try and do it ourselves, carrying the burdens and making the plans when all we need to do is look up and see the big picture; what you’re accomplishing for our loved one, what we’re learning for ourselves, and what is going to benefit us all in the long run.

God is always able to see the “big picture”. If we allow Him to guide our steps in caregiving, it makes our lives much easier…well, if not easier, at least more peaceful and perhaps even joyful. Take a breath, take time to pray, and look at the big picture; this job is SO worth your time and energy!

Rollin' Right Along...

Happy New Year to you all! Sorry I've been delinquent with my posts over the Christmas season. Time just flies during the holidays, and it seems to start earlier every year! I do hope all of you had a lovely time with your families during the celebration of our Savior's birth while we were apart.

We bought ourselves an extravagant Christmas present. We traded in our van with the power chair hoist in the back, for a ramp van! It was quite a challenging endeavor, but we did it and I've got to say it's already been easier to load and unload Jamey for a trip. Now that it's here, I'm sure we'll be getting out more and doing some of the things we've been putting off because of inconvenience. We've been wanting to go up to the SF Zoo and visit Walt Disney's Museum at the Presidio, too, so perhaps we'll finally do those things one of these days.

In case you someday decide to take the plunge, I do want to share our van-buying experience with you. There are actually quite a few places where you can purchase vans equipped with either a hoist with a wench to pull up a power chair, an attached (fold-up) trailer of sorts, or a van with a ramp like the one we purchased. Mobility Works in Santa Clara and Access Options in Fremont are just a couple of places to visit. We ended up at Mobility Works and they treated us like royalty! They did make the process fairly easy.

Converted Dodge Grand Caravan

One thing I do want to mention to those of you who might be in the market, a ramp van is not a small expense. Once you have decided on the van you want, you will have many extras to consider, which do add to the cost as well. We were able to buy one of their "rental" vans (every time it is returned after renting, it is serviced) and, although the mileage was a little higher than we would have liked, it was in great condition--looked new.

There are two choices for ramps; rear entry or side entry. The rear entry vans are great, as the middle seat remains intact and others can ride comfortably with you. It is also easier to park anywhere as there is no need to find a spot with an area to the right of the van for unloading. The drawback is that the person in the power chair must be strapped in and ride in the power chair while traveling. There is no option to transfer into a van seat. There are also two kinds of ramps; in-floor and folding. Both come out automatically when the door is opened. The in-floor ramp is sleek and slides right into the flooring so it isn't noticeable at all. It provides plenty of room for the power chair or scooter. The folding ramp takes up a little space in the doorway to the van, but it is easier to place next to a curb and tends to need servicing less frequently.

We opted for the side load and folding ramp. Since Jamey is still able to move from his chair, I wanted to be able to accommodate him in the front with me. As much as I liked the in-floor ramp, I knew we would have to park next to curbs often, and I liked the way the folded ramp was able to adjust to that; the in-floor doesn't fluctuate once it's on it's way out. The side load van does have a very cool feature. When you engage the ramp, the van "kneels" for you. In other words, the van tilts down to the ramp side and gives the person in the power chair a smaller incline to navigate. When you put up the ramp, the car comes back up into its normal driving position. Very cool!

This ramp is hinged in the middle

Be sure to look over all of the options available before you make a decision. The companies are there to service you, not the other way around. There is no wrong decision, it just has to be the right fit for your family.

Of course they offered me a service contract. I chose part of it but didn't want the entire package. One of the things I did take advantage of was a 24-hour ADA vehicle pick-up in case our van breaks down or needs service. In addition, I had them put in a front passenger swivel seat so that Jamey can transfer himself from the power chair once he drives the chair up the ramp. The other "must have" I ordered was a digital back-up view camera which shows up in my rear view mirror every time I put the vehicle in reverse. That has been such a huge help, especially since the van is much heavier and bulkier than I'm used to.

Gas/break on left and turning knob on right

I did run into a little snag with the van. This is not something most of you will ever have to deal with, but I feel the need to share it in case any of you might have disabilities in your legs or feet. After my stroke I had a left foot pedal put into my other van. But, California is easing those out of circulation and moving to hand controls in all of the ADA vehicles. Well, that presented a problem for us. I had to be evaluated by an expert ($600), had to take special lessons ($200), had to get a prescription for the hand controls, and had to have the hand-controls put into the van ($1600). Of course this delayed delivery of the van and we barely got it in time for Christmas. By the way, if you're used to driving with a left foot pedal, hand controls are far more difficult and even after a month, I'm still not completely comfortable. But it's a learning curve, as my chiropractor says, and I'm usually up for a challenge (God knows I've had plenty of them)!

With that said, I am very glad we made the move and I know in the long run it will be wonderful. If you need referrals for ADA vehicles or special hand controls, please let me know; I'm happy to recommend some excellent companies to you.

I've got to go drive now...talk to you very soon!

Looking for An Assisted Living Place?

Pacific Gardens, Santa Clara

The time may come when you need to seek out Assisted Living apartments for your loved one. It is an exhaustive search, but it can also be very rewarding. While my parents weren't in their apartment for more than a couple of years, the times there were some of their richest and most rewarding.

I started my search with a form I created, listing all the questions I wanted to have answered (See Caregiver Info at right). Then, I did an online search to get all available local facilities. Since my time was limited while still working, I made appointments at the most promising places on weekends. I tried not to schedule more than two appointments a week so I wouldn't get burnt out or mix up the places.

I did not take my parents with me to the appointments as they tired easily and there was no reason for them to be at the initial meetings. I arrived for the appointments on time and filled out as much of my form as I could while in the waiting area. I took a photo of the outside of the building.

As I got tours of the places, I wrote down my observations and filled out the rest of the form by asking questions of the host. At home I printed off the photo and stapled it to the form to prompt my memory when narrowing down the selections.

Then, I made lunch appointments for the most promising places, to include my parents (and other siblings). That way we could taste the food and interact with the other residents. Meal times bring out the best, and worst, in residents at the facilities, so it's a good time to observe. I was careful not to schedule more than two lunch dates in a week, so as not to overwhelm my parents.

I made notations on the form after eating at each place as well. When my parents and I got back together, we discussed each place and noted its pros and cons. The notes and observations (as well as the photo) helped jog memories for my parents. It made the task of deciding much easier.

Westmont, Santa Clara

One we decided which was the best fit for them, I called and started the ball in motion. We were fortunate that there were a couple of apartments available, which isn't always the case. Don't be surprised if you need to be put on a waiting list; a good reason to start this process sooner than you think you need to.

Once they were moved, it took several months for my parents to get adjusted (particularly my mother).But once she started getting plugged into the activities, she warmed up to the other residents and enjoyed her time there.

For my mom, it was more important the place be small and intimate. Others might find a larger, "chain" facility more appealing. Whatever is needed, you've got to start with a few simple questions. That will help you narrow down the choices and hopefully, help you find a place that will become home for your loved ones for a very long time.

Respite Workers

I've emphasized multiple times how important it is for caregivers to get a break from their duties. You're always more effective when you are rested. And let's face it, your loved one could probably use a break from you as much as you need one from them!

So, once you've decided to get away, how can you know your loved one is getting the care they need while you're gone? One of my fellow caregivers has a fantastic idea that I'm passing on to you!

Start with two things: a binder (1" or so should do it), and a journal of some sort (maybe an essay book like the college kids use for testing). For the journal, whatever you like to write in works, however I would encourage you to get something with lines pre-printed. If you're a bit OCD like me, you'll want to get a binder and journal that match. Or, perhaps your loved one will want to help you decorate the journal; those with dementia usually like doing projects!

In the binder, put everything the respite worker will need, to tend to your loved one. For instance, I have an Emergency Information Sheet and Liability Waiver (see Caregiver Info at right), a layout of the daily routine, In-depth medication list with side effects and expectations, directions for Heimlich Maneuver and  CPR, Bedtime routine, loved one's likes and dislikes, what agitates or soothes your loved one, bathing and toileting helps and schedules, etc. You can put dividers in to make things easier to access, but it isn't necessary unless you've got a great deal of information.

A fold-back binder

The nice thing about the binder is the caregiver can add things as new issues come up, or take away things when changes occur. That will insure instruction is always up-to-date for the respite worker. And if you get one of those cool binders where the bottom folds back it can stand up on the counter so the respite worker can get a good look while working.

A good-sized journal, easy too write in

The journal is for the respite worker to write anything that goes on during the day. For instance, if the loved one had to be on oxygen for 1/2 an hour during the day that should be recorded in the journal, noting time, date and duration. If the caregiver starts keeping this journal now it will be easier for the respite worker to see what the routine has been and whether or not the loved one has veered off the routine. When the caregiver returns from the break (whether it's a couple hours or a couple of days) they will know exactly what took place in their absence.

This system is a winner from all viewpoints! The loved one can be assured they will get consistent care, the respite worker will know exactly what is expected, and the caregiver will be able to rest completely while they're away!

My binder is packed full and I'm always adding and subtraction medication information and routine info. It's very helpful when it's complete!

Durable Power of Attorney

Durable Power of Attorney or POA, should not be confused with Medical Power of Attorney or Medical Directive Attorney. A POA is a written authorization to represent or act on another's behalf in private affairs, business, or some other legal matter, sometimes against the wishes of the other. In this case, the caregiver is the “other” or POA, and the loved one is the one who will authorize the caregiver.

The best time for your loved one to authorize their POA is before they need it. While your loved one is still lucid and able to make the decision to elect you as POA, it is the time to do the paperwork!

If your loved one has a lawyer (preferably the one that did their Trust or Will), contact them to set up an appointment for drafting a POA. Each lawyer or attorney will have their own fees associated with this procedure, but it is worth it. If you or your loved one haven’t had a Will drafted, or your estate is not yet in a Trust, please consider it. Estates will be tied up in probate for a minimum of 2 years in California, and often even longer. Not only that, but the state will make arbitrary decisions regarding your loved one’s money if direction isn’t already provided in a Trust.

If your loved one doesn’t have a private attorney or you’re only interested in having a POA drafted, the easiest way I’ve found to provide one is through www.LegalZoom.com. Now, there is one little yellow flag with this online assistance. Depending on how the Trust is worded, or the Will stated, some banks might take issue with the LegalZoom document. Always check with your bank’s legal department before you order the papers from LegalZoom. Chase Bank, in particular, tends to err on the side of caution when it comes to POAs (which of course is a good thing for your loved one, but a bit inconvenient for you). If your bank requires a statement on letterhead from the attorney who drafted the POA document, LegalZoom will not provide it, as they are not an attorney’s office. However, their documents are trustworthy, accurate, and legal. The wording of the Trust will make the difference in whether whether or not your loved on'es bank accepts the POA as drafted. By checking ahead of time, you’ll know what is needed up front and save yourself a lot of time and energy.

LegalZoom documents can be ordered online quickly and inexpensively. Once they arrive all you need to do is have a Notary witness yours and your loved one’s signatures. If your loved one cannot write, fear not! All that is needed is a mark. Once the Notary signs off, you can make copies of the document and send them to all banks, creditors, and financial institutions so your loved one no longer has to be present to communicate with these places.

Even with a POA in place, you will always want to check with your loved about their wishes in their business or private affairs. You are their advocate and should always be sure you are carrying out their desires the way they would want. Stay in communication with them as well, letting them know what is going on and what decisions you’ve made on their behalf.

The Hieimlich Maneuver