Independence!

Walking that fine line between enabling and assisting is a tough one. And, obviously, it’s going to be different for every disease, every individual, and every circumstance. But, if you can help your loved one feel independent, in any capacity, it will be a blessing for you both.

Decision making is a way to keep your loved one independent. If they are still able to make their own decisions, let them. If you are the Power of Attorney for your loved one, but they are still able to make cognitive choices, always ask them what their wishes are, and carry them out appropriately. Making their own decisions, even if they are small ones, can arm the loved one with confidence. We all want to feel needed and capable. Whatever wise choices your loved one is still able to make on their own, let them. Even something as small as choosing what they will wear in the morning can help them to feel they are in control if only a little bit.

While allowing our loved ones to make their own decisions is important, but so is allowing them to maneuver, unassisted throughout their home. Letting our loved ones choose how and when they will move within their home is a large part of their independence. Parkinson’s patients often have several modes of transport depending on how their bodies are functioning at a given time. My husband has a U-walker, a scooter, a power chair and a cane; he uses each at different times depending on what the disease is doing in his body. It may be tempting to run to your loved one’s aid each time they rise from a chair, or move into another room, but doing that can cause unintentional stress to your loved one and to you as well. Of course you don’t want to let your loved one move about if there is a risk of falling involved. But, as long as moving about does not pose a serious risk, I say, let your loved one do so unassisted. It’s a simple thing, but can go a long way to helping your loved one feel free and unfettered. Note: If, as a caregiver, you feel it is unsafe for your loved one to move about on their own, find other ways to help keep their independence intact.

When a loved one knows his caregiver will do whatever the loved one wants and jump at the slightest need, the loved one will sometimes give up the ship earlier than necessary and allow the caregiver to do everything for them. That can create dissension and an attitude of entitlement in the loved one. This is often not the love one's conscious decision, but an attitude that comes from a lack of independence. Allowing your loved ones to do whatever they are able to do at the moment may be difficult for you at first, but in the long run it will be good for you both.

If your loved one has difficulty speaking, like mine does, don’t finish their sentences for them. Be patient and allow them to finish on their own. If your loved one stutters because of Parkinson’s or some other issue, it can be exhausting to let them speak for themselves. But letting them talk and express themselves is important; it keeps your loved one communicating. If you’ve been around your love one for a long time, you’ve no doubt learned to interpret the grunts and body gestures they make when they speak. Keep allowing them to do this as long as they can, even though it is difficult for you.

The biggest and most important way to allow your loved one their own independence, is to ask them questions. Communicate with them about what they require, what their limitations are and what they want to do themselves. I realize with Parkinson's there isn't always a blanket requirement because of the way the disease changes, but if you can lay out a plan of how you'll know when your loved one needs help and when he/she can do it himself, that will be a huge benefit.

It won't be easy. Love never is. But, if you can do whatever is required to allow your loved one the independence they want and need, you will both be happier for the long haul.

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!