Caregiver Resources

So, I never knew about caregiver resource centers till I moved to Northern California! Quite frankly, I didn't know there was such a thing available to the home caregiver. I wasn't able to find anything in San Jose when we lived there.

We have a facility here in Citrus Heights, whose sole purpose it is to help the home caregiver! The company, Del Oro Caregiver Resource Center, supplies respite, a yearly seminar, counseling, and more, at no charge to you. And, they don't base the help you receive, on your income!

We've been here for close to 2 years, now. And this is the second year Del Oro has given us vouchers for extra help to take care of Jamey. That has saved us $2,000!  I have someone come in on Wednesday so I can go to my Bible Study without worry about him alone. She showers, shaves and dresses him so it gives me a break one day a week.

Since home caregivers no longer receive a stipend from the government (we hope that will change in the near future), we must rely on help from places like Del Oro. I encourage you to find caregiver resources in your area.l have received not only respite care, but also encouragement and counseling when I need a pick-me-up. At their yearly get together, I meet many others in my same situation, and Del Oro provides great guest speakers with practical ideas to help caregivers get through difficult times. Last year there were about 200 of us and they supplied a scrumptious lunch, lots of resource booths, and massage off and on all day! So wonderful! It didn't cost any of us a dime. I've got to tell you, that one day got me through about six months of caregiving!

So get on that computer and start surfing (shoot the curl!) for caregiver resources in your area. Look specifically for centers that provide financial and respite help. Please let me know if you find anything in your area and I'll let my readers know, too!

 Del Oro has been a huge blessing to us and hopefully you can find something just as beneficial!

MY ACHING BACK!

Once again I took a fall. This time it wasn't minimal. I broke my back. Yep...a compression fracture of L-3. When I do something, I do it really well! Needless to say, we have had to scramble to find help for Jamey.

Since he is now in the next stage of the disease, incontinence, we have had to hire people other than friends or family to help. Though it took a while and I was in a tither the first week after I got home from the hospital, people stepped up royally and we finally have most of our shifts covered. I will likely keep people on after I have healed, because the job has become more difficult for one who will always have back pain.

In order to keep you all from re-inventing the wheel, I'd like to share what I have learned about using a caregiver other than yourself.

MAKE LISTS
Right now, before a crisis, write down everything you do to help your Loved One. Things like lifting him out of bed and toileting. But even list the little things like, showering, shaving, making meals, cleaning up after meals, laundry, etc. Keep in mind your Loved One's ADLS (Activities of Daily Living) that they can or cannot do and be sure to account for those.

On another list, put down all your friend and family members who are able to assist you with even small items. Go down both lists and match up your friends and family members with the chores for which they are gifted or able to do best. For instance, my youngest daughter lives about 3 hours away. Even though she'd like to help with the every day jobs, she isn't able to because of distance. When we needed additional help, We set up an ad to hire caregivers. My daughter was able to take the responses from that ad and ask important questions to narrow down the many resumes. This would have taken me a great deal of time and energy (something I didn't have with my pain level). She was able to give me a much smaller list of candidates, and she was a valuable part of the team. My oldest daughter who lives close by, was happy to hand off that task to the younger daughter!

For the jobs that aren't appropriate for a friend or family member (things like toileting and bathing), move those to a new list for in-home caregivers. Think about when those things are needed. I know that's a difficult thing with PD; it varies from day to day or for that matter, hour to hour. Do your best. In our case toileting is an issue, but so is bedtime. I cannot lift, bend or twist while my back is healing, so getting my husband into bed is impossible without doing one or more of those things. Right off the bat, I knew I was going to need someone to come in between 10PM and 11PM to do that for me.

Other than what a professional caregiver can provide, continue to add to your list as things come up. Keep the list with you. When someone asks you what they can do to help, pull out your list. Don't be afraid or embarrassed. They asked--let them help!

Once your caregiver list is complete you can start asking friends of friends for names of caregivers. In my opinion, word of mouth is the best background check; it's free and dependable. Or you can seek out an organization that provides caregivers. (More about that below).

IN-HOME CAREGIVER RESOURCES
I have a mix of independent caregivers and caregivers who are provided by an organization. Here are some pros and cons of both.
Be sure and ask your Loved One if he/she has a preference in age or gender of his/her caregiver. Remember, they are used to you. It will be a difficult change for them. Try and be supportive. Make it as easy as possible.

Pros for Independents:

• Often able to charge less because they receive all of the money. 
• Often able to work a shorter minimum shift (1 to 2 hours)
• Often able to be more flexible
• They don't need to check into the office when they arrive at your home

Pros for Organizations:

• Receipt for tax purposes
• Background check is done
• Insurance is provided
• If you have a complaint you needn't talk directly to the caregiver
• If someone has to call in sick, they will send another caregiver

Cons for Independents:

• Rarely carry their own insurance (your homeowner's needs to cover)
• Won't write a receipt unless you ask (be careful about paying cash; while it's not your   business whether they claim their income, they need to know you will be writing off     this as a medical expense so they can be audited)
• If you have issues with them, you have to deal with them directly
• If they are sick, you will be without care that day
• Necessary to pay out a 1099 at end of year (have them fill out a W-9 before working)
• If you pay them more than $2000 you will need to take out their taxes for them and keep track of all other legalities.

Cons for Organizations:

• Often a minimum shift of 4 hours
• Pricing is high and caregiver gets less than half of the money
• Often have to wait a long time for them to get back to you when you request a caregiver
• If you cancel less than 24 hours, you still pay (This is actually a good rule, even for an independent. It protects them from losing money when you have a change of circumstance. I always pay my independents if I have to cancel in less than 24 hours. There isn't any way they can find a replacement job in that time).
• You will have to meet, perhaps multiple times, with the Supervisor and each caregiver you hire (depending on how you look at it, this might be a pro)

Some Reputable Organizations:

Home Instead

Visiting Angels

Right at Home

Comfort Keepers

Some Reputable Independent Sources

www.care.com

www.caring.com

Be advised, it is difficult to fill a 1 or 2 hour night shift. My husband has to go to bed an hour early to accommodate the help we have. Our situation is only temporary, however, we might have to do this from now on. In that case, his circadian rhythm may need changing.

Note: Since I am home during the times the caregiver is here, it was not as important to me to have a background check done. The caregiver will not be as able to take advantage or abuse my Loved One. However, if you would feel more comfortable to have a background check done, it is well worth the money for your peace of mind.

KEEP YOUR FREEZER FULL
When someone offers to bring a meal, but you already have one for the night, accept it graciously and put it in the freezer. If your freezer stays full you will have plenty of meals to fall back on when you're having a bad day. And you will have days when you don't have the energy to prepare a meal. Whether or not you eat, you need to feed your loved one a balanced and healthy meal.

USE YOUR CAREGIVERS!
Make up checklists for your caregivers so they have things to keep them busy. Time drags when you don't have something to do. With Parkinson's (and other diseases) you are not always busy constantly. If you have a checklist for Daily things as well as Weekly items, they can do things in between helping with your Loved One. Plan ahead and have meals ready to prepare. I have found that most caregivers love to cook, so give them a recipe and have them prepare your meals, either for that night, or for freezing. Crock pot meals are great because all you have to do is drop the prepared food in, turn it on and you'll have a hot dinner in a couple hours.

Let them do laundry and light housework. I have my Wednesday lady, take the garbage out to the curb for me because I cannot do it the night before (we have wild critters here that shred the bags and make it counter productive). ;) Today, I had one of my caregivers spot clean the carpet because I cannot get down on the floor right now. It looks great and makes me happy! She's happy because she didn't have to sit idle all day long.

SIGNS
Make up signs to hang over the washer, dryer, microwave and oven, telling how to use the machines. This will keep caregivers from making costly mistakes like putting laundry soap into the bleach receptacle (ask me how I know this) haha. Writing up the process for when the garbage should go out, whether you recycle, when groceries need to be purchased (or when they are delivered), etc., can make your job much easier as well. It's like managing an office. You need to train and delegate. If you don't do your job, they can't do theirs.

I'm sure I'll think of something more to add after I post this. But for now, these are the main things I've experienced since I broke my back. I hope this helps you navigate.

I have only one more question...
Which one of you daughters stepped on the crack?!

Echo...Echo...Echo...

I'm sure you've all heard about this cute little disc by Amazon (yeah, Amazon needed another money-maker), called the Echo Dot. While it is a creative new gadget, I didn't think it was much more than a fad or gimmick that would be of little use to us. I was wrong!

This thing has been a huge help to Jamey! Even though his words are not perfect, and he takes a little time to get to a question out, Echo is a great little service "animal". She adapts herself to the way he speaks and is able to accommodate him quite nicely! You can call her Alexa, Amazon, or Echo. Since syllables are a little challenging for Jamey, we set the device to answer to just Echo. Much easier for a stutterer!

During the course of the day, I can hear Jamey ask Echo a multitude of questions; What's the weather, can you play my playlist, What is my schedule today, What time does the movie start, What is the football/baseball/basketball schedule on TV? These are things for which he would normally have to use his keyboard (a difficult task for him), or ask me, and then promptly forget. Having answers at his tongue-tip is great, and Echo doesn't get upset if he has to ask her the same thing several times a day! If Jamey uses the last of an item in the house, he can tell Echo to add that item to the grocery list. It saves him trying to move a pen across paper, and when I get ready to do the shopping, I ask Echo what is on his list and add it to main list. Awesome!!

I think the best thing about Echo is her ability to keep Jamey's doctor schedule. Because of the short-term memory loss from the Parkinson's, he needs to be reminded several times a day if he has an appointment. Echo easily lets him know what's going on. She also alerts him when he needs to take his medication. She's a smart little cookie (maybe that's why she's shaped like one!). 😄

Jamey loves to learn, and Echo can tell him anything he wants to know...she pulls info from the internet faster than we can. And she has far more abilities we don't even use. But for now, I am impressed at what she can do to alleviate some of the stress of caregiving and disease. Although, I do get a little jealous that he talks to her more than me. LOL  I think this is a worthwhile thing to have in your arsenal of helper-items, and it is affordable for most everyone.

This has been an eye-opener, though. It turns out she's a better caregiver than I am--she'll even read him a bedtime story if he asks!

A Lot Has Happened!

Forgive the lapse in blog posting! We've had a lot of changes since we last talked!
Hopefully I'm back for awhile.

Moving households is difficult enough for people our age, but throw Parkinson's and stroke issues into the mix and you've got yourself a challenging situation, at best. In addition to the move (just 18 months ago), our oldest daughter got married and our youngest daughter and her husband brought us our first grandchild! All of this amidst constant construction to set up the mobile home for a power chair! Needless to say, it has been a bit stressful.

Parkinson's symptoms become worse when a stressful situation arises. Jamey has been quite the trooper, but we have seen the disease progress with this move. Now that construction is finally finished, and the place is set up well for him, we should not have to move again (barring unforeseen circumstances).

Because of the progression of the disease, we have had to purchase several new pieces of durable medical equipment.

INVACARE PORTABLE LIFT
Jamey cannot control his body well any longer. There are times when he cannot get off the bed or transfer from one chair to another. While he is in the power chair most of the time, he tries to get up and move when he feels he can. Unfortunately, that doesn't always work out the way he'd like. Sometimes he gets stuck. I'm not able to lift him any longer, so we invested in a portable lift. We looked into the Hoyer Lifts, but they do not currently make one that rolls well on carpeting, so we ended up with an Invacare lift (all his power chairs have been Invacare). At night, the sling comes off and we position the lift over the bed so that Jamey can grab the trapeze in the night to help reposition himself without waking me every time. It has been a huge help! It's also very quiet. I rarely hear it when he moves it up or down in the wee hours of the morning.

The lift came with a basic sling and there are many others you can buy. There is one with a hole in the bottom for toileting, one that reclines more, and one that sits the patient upright. There is also a sling for standing if that is required.

EZ-LOCK SYSTEM IN VAN
As I said, transferring is more difficult now, as is my ability to help move him. So, we had an EZ-Lock system installed in the mobility van. It's a V-shaped brace that attaches to the floor of the van and is wired into the dash. They also install a bar to the bottom of the power chair. When Jamey drives the chair into the van, he positions his footrest over the V and continues forward. The system grabs his chair and locks it into place. We pull the seatbelt that is attached for the back passenger, across his body and snap it into place. He is perfectly secure to ride anywhere now. We do not need to transfer him in and out! Just be sure the chair you have is compatible with the EZ-lock system. Go online to www.EZlock.net. They have a listing of compatible wheelchairs. You'll be hard pressed to find one that ISN'T compatible, but of course, ours wasn't! We ended purchasing another chair, too. LOL

Mobility Works (they have stores all over the nation) did all of the van work. They are a wonderful group of people and they will work with you to find the best solution for your needs. We used them when we lived in Santa Clara for our first van. Now we have to go clear to Sacramento for service. But, it is worth it!

INVACARE PRONTO M-61 POWER CHAIR
The unfortunate thing I found when ordering this chair, is that there is nowhere to go and look at the chairs, try them out, etc. Our insurance wouldn't pay for the chair this time (new rules for Obamacare) so we didn't have the benefit of going through Kaiser or having his Neurologist suggest a chair). Everything is done online with these, so you never know what you're going to get!

Jamey's last power chair was the Invacare Pronto M-41. For the most part, he liked the chair. In particular, the joy-stick/propulsion system was easy for him to work. There were a few things I didn't like about that chair. The biggest issue for me was the sound it made when it clicked into gear. For some reason, since my stroke, I cannot tolerate certain sounds; that was one of those sounds! I researched at least 20 chairs: Golden Compass, Pride, Nutron, Bruno, Invacare, and more. We kept coming back to the Invacare because we've had such great luck with them. It has a very tight turning radius and the seat elevates so that Jamey can reach things on shelves and then go back down again. It allows him to be a little more independent. AND, they have fixed the sound issue on this new chair! Woo Hoo!

When researching, I asked Jamey what he MOST wanted in the new chair. He listed several things. Then, I measured his current chair so that we were sure to get something similar in size (and it would still go through the newly widened doors). I made a spread sheet of all the features (including sizes) of each chair and then we looked over the list and narrowed it further. After we had about 3 chairs in the running, we went to EZ-Lock's website and checked their compatibility list. Once we decided which chair, we placed a call to Spin Life (www.spinlife.com) and talked with a sales rep personally. Because we needed White Glove service, I didn't want to order online. As it is, we also needed to order accessories for the chair, too, so it worked out better to speak with someone personally. They were very helpful and the chair arrived within two weeks.


FRENCH DOORS AND RESIDENTIAL LIFTS
The only way in and out of the new mobile home (for Jamey) was through a very narrow laundry room door. It was not convenient, nor was it safe in an emergency. So we had two sets of French doors put in; one in the front, off the carport, and one in the back. We ordered two residential lifts so that he could get out easily, without my help. We also had a deck built off the back lift. When it isn't raining, he enjoys spending time out there.

The lifts are a must-have for independence. With a ramp, you are required to have 1 foot of ramp for every 1" of height. In other words, we would have had to have a 27 foot ramp to accommodate the height of our mobile home. That would have been ridiculous, turning back and forth on itself around the yard! LOL Plus, by doing a residential lift, we saved $200 for a permit. None needed for a lift! Our lifts were affordable at around $6,000 (one was used and refurbished so a little less). The model we chose is Mac's Lift PL-150. Works like a dream!

OTHER CONSTRUCTION
Here are some of the other things we've had done to help Jamey move around the house.

A) We opened up the master bath by taking out the door between the commode and the sink area, combining both sinks into one and freeing up the entire area against the back wall.

B) Widened all doorways to 32" (would like to have done 36" but not enough room in a mobile home)

C) Built island bar so Jamey's chair can slip under for eating.

D) Had patio built and extended from lift area so he can go from back lift all the way out to the front of the mobile.

E) Cleared out several walls to achieve a more open floorplan to accommodate power chair.

Well, as you can see, there has been a lot to take in. But, I think we're getting settled and it's so nice to have a guest room where the kids (and now, grandkids) can come visit!

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!