Social Security Disability -
Filing for social security can be a tedious process. We recommend filing online vs. in person or over the phone. The longer you wait to file after becoming disabled, the harder it may be to secure status. Depending on your age and ailment you are required to file different forms. The Social Security Administration has a helpful site that separates your needs accordingly. They have a "starter kit" available online that will aide you in the process. We recommend compiling all the necessary paperwork that is required before beginning the process online or in person. You'll find these forms useful in preparing to file. Before you file read this.
Legal Documents/Forms -
We highly recommend these forms for any married couple. It's better to attain these documents before crisis occurs. It's well worth your time and money and will save you some headache in the long run. Legal documentation is necessary in any major transaction and/or situation once illness begins and then finally death, should that occur.
1. Free Last Will and Testament - A legally binding document that stipulates how a person's assets, including real estate, personal property, and investments, are distributed after the person dies.
2. Power of Attorney - Is a written authorization to represent or act on another's behalf in private affairs, business, or some other legal matter.
3. Healthcare Directive - A type of advance directive in which you name a person to make decisions for you when you are unable to do so.
4. Community Property Agreement - To avoid probate after the first spouse or registered domestic partner dies, the agreement must state that all property, including any property acquired by either person after the document is signed, is community property. Only applicable in 8 states.
You can hire a lawyer to complete these forms or use a legally binding service such as legal zoom.
Find an Advocate -
When you find yourself at a crux in the road where you know the journey you're on is in fact forever, it can feel isolating and painful. Grief sets in the moment you hear the news from your doctor, or reality sets in and you know your loved one will never be the same. Being a caregiver to a loved one who is suffering is life changing. It will pull you through so many different loops and highs and lows, you'll think you're on a roller coaster. And sometimes it's a scary, tiresome track that often feels endless.
That is where an advocate comes in. We encourage you to find someone you can count on. Someone who would be willing to follow you to doctor's appointments and take notes if you asked them to, someone who will listen more than offer suggestions. A person that can handle the emotions you're sifting through, be the shoulder to cry on, the ear that listens and the person that encourages. These kinds of people are literal gifts to one's grief journey. I think you'll find the experience of sharing your pain and trials and triumphs more rewarding too, as you share your life with someone who is committed to praying for you and being there every step of the way.
God gives us community to share in his goodness. He asks his people to care for people and extend
a hand to the hurting, the widow, the motherless. Ask God to show you someone who may stand in as your
advocate as you care for your family, if perhaps you haven't been blessed by this person already!
Some things to think about:
1. Is my advocate too close to the situation? Often times a family member is dealing with their own grief and is too closely tied to be your person. Their process and grief can become one more thing you have to bear. Pray for an advocate that loves and cares, but isn't as intimately connected with the situation.
2. Will my advocate expect the same type of devotion should the roles be reversed? You may find that your advocate finds you, and often times, they have walked a similar path or been through deep waters like you're experiencing. Will this person give selflessly or are they expecting the same devotion to their life once they give you theirs? Neither is bad, but beware of which direction it will go. Most often we are not in the place to take on another person's grief while we are in our own deep places of the grieving process. We've found that often your more sacred advocates come in the most unexpected ways. And then in some special cases, they become friends for life and you're more than willing to give the same type of devotion back to them.
3. Do I trust my advocate? Trust is huge when making big decisions about your loved one's medical care. Do I trust them to hear our finances? Will they wince at the reality of our every day lives while caring for our loved one physically? Does this person want only my good? Or will this person drain me? Are they in for the long haul?
Doctor Visit Documentation -
Every health journey is different. In some cases, it can take months to get a diagnosis. Once diagnosed, you may find yourself with new questions as the ailment or disease progresses. On average doctors spend between 11-20 minutes with each patient. The time spent actually speaking to your doctor is crucial to get the most out of your experience. We have found that paper work can pile up over the course of one's health journey. We recommend getting a three hole binder and saving each doctor's note, receipt and doctor print out so that when you have a follow-up or see a referral doctor, all your information past and present, is in your hands! There's nothing worse than leaving the doctor's office and remembering that one question you forgot to ask! We've provided these free print outs to assist you in tracking your health journey. Click on the hearts to print the free documents.
Wellness & Living Checklist
A general health and wellness checklist for the caregiver. Some items may or may not apply to your situation.
Initial Doctor's Appointment
It's good to get your thoughts in order before your first visit
to your regular doctor
or referred doctor.
Follow - Up Visit(s)
A general idea of questions to ask in a follow-up visit.
Daily Medication Form
To document your daily medication history
On-going Medication Form
A medication spread sheet to document your daily medicine intake.
What to Expect - Common Medical Procedures
You may find yourself sitting in a hospital room hearing medical terms and knowing certain procedures are going to be necessary for your health and wellness, but exactly comprehending how they will affect your life on a day to day basis has yet to sink in. That is daunting for both caregiver and the one carrying the ailment. We hope to provide more information on common medical procedures from a personal perspective so you know what to expect. We also hope this will encourage you and give a real life picture of what it's like to carry these procedures on in your health journey. As we learn more, we'll add to this page!
Amputation - An amputation of limb(s) usually happens without much warning and can take years to learn how to live with such loss! We asked a family who thrives in their daily lives with an amputated leg. Here's what he said:
"There is a shock that comes with losing a limb or partial limb. My leg was cut off just below the knee. The severity of the situation gave us little time to prepare or study what my life would be like in the days and weeks following the procedure. It would have been helpful for me mentally if I had taken the time to attend a support group or seek some sort of counsel from other like minded people who were going through the same thing. It takes a lot more physical strength and mental aptitude to do simple every day tasks. I was more worn out all the time at first getting used to my new life style, and experience that some to this day, but like anything else you get used to it to some degree. My wife has had to assist me in many different ways, but we've also changed some things in our home to make daily tasks easier, such as adding hand rails, shower seats, and so forth. I don't mind talking about my disability with others and even let children touch my prosthetic, which they think is pretty cool. I think there's value in others knowing that other people have different strengths and abilities even if you have a disability. It doesn't take away from my capabilities and who I am as a person, it only strengthens those aspects of who I am. I would tell anyone who has undergone this kind of loss, to do as much research as possible and find others who have gone through similar things. Amplitude Magazine is a very helpful resource." - Bill, Portland OR
PICC Line - PICC lines are essentially IV tubes or catheters that are inserted for longer use than other IV lines and eliminates constant needle pricks. You can have one for months, weeks or even years, depending on your needs. We found this site helpful and includes a video of what to expect.
Our very own board member, Candace, has had a PICC line. Here's what she said:
"It was more painful to have it inserted than I expected, and the pain lasted a few days. Apparently younger people feel it more than elderly folks do. Older people often sleep through the procedure. When they put it in, everything has to be very sterile. They completely cover you in disposable cloths. Showering is difficult because you cannot get it wet. We tried the covers from the hospital but they don’t work well. We tried wrapping it with a bag. In the end, we purchased a rubber cast cover off amazon that worked like a charm. When the nurse came to my house to clean my PICC once a week, it was more painful than I expected. The tape they use does a number to your skin, and there’s a decent size tube going into your arm, so the wound is open. What they use to clean it burns the wound. I recommend asking your nurse for a different tape solution to make the site more bearable for dressing changes. They measure the tubing that’s poking outside if your arm, because as your heart beats, it can pull the tubing in further, and they don’t want it getting too close to your heart. They had to pull mine out a little a couple of times because that was happening, and it didn’t feel great.The whole experience is pretty uncomfortable & inconvenient, but they can draw blood & administer medication, so you don’t have to get poked so many times. That is the best part about it, but it can be hassle. Having it removed was easier & faster than having it put in. I had to keep reminding myself that this silly thing was just part of my health story, not the end all. If you're undergoing a PICC line, I encourage you to find things that keep your mind thinking positively." - Candace, Sandy OR
G-Tube - Some people have medical problems that prevent them from being able to take adequate nutrition by mouth. A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. We asked Kylee Madsen what it's like, and here's what she said:
"The procedure was done under anesthesia and so it was not something I remember. Initially it was uncomfortable. I basically had an open wound that needed to “heal” so that it would not be painful. Movement of the tube felt like rubbing an open wound and so I tried to remain very still. It was difficult for me. I was fearful of the idea of a g-tube and so to have one was difficult for me. I was afraid of the pain, I was grossed out initially by what it was. It got better over time. I was able to adjust and work through my fears and it became no big deal. I had mine for a little over 4 years. I did not use it on a regular basis but I kept it there because it had become a “safety net” in my mind. I would recommend, if possible, to get the low profile g-tube. It is less bulky and easier to “hide” under clothing. I was also less fearful of it getting yanked on with the lower profile version. My encouragement would be that it does not define who you are. It is a means to keep you healthy and that makes it important. Do not let it change how you view yourself. You are beautiful and nothing can change that. Flaunt that bathing suit or bikini and don’t care about the looks you may receive. You can always use it as an opportunity to educate others."
To educate yourself on home care and life with a g-tube, check out this site and this site.
Ostomy Bag - Is a surgically created opening in your abdomen that allows waste or urine to leave your body and collects in a bag. Depending on your medical needs, ostomy bags may be a temporary solution while another part of your body heals or some people live with them their entire lives. We asked a good friend what life was initially like with an ostomy bag. Here's what she said:
"They put a stoma in placed while you’re in surgery, so I don’t remember it. It was very painful for awhile. Not only do you have intestines poking outside your body through an open wound, you have to clean it and it stings. Daily it was really difficult to adjust to. It took me about a month to get used to it. You no longer are having bowel movements like a normal person, it’s all in your ostomy bag. When you get bubbles in your stomach, they will bubble out the opening in stomach and can sound like tooting noise. That was a little embarrassing, but you have to find the humor in it. The trickiest part is changing it without making a mess. Also trying to find clothes that would work to cover the bag properly was tough for me. I was also very self conscious about how it smelled. I recommend buying a cover for your bag! That will help so much with the clothing issue. Even if it pokes out, it has cute cloth to cover it. Change your bag first thing in the morning. Before putting a new one on, rinse your stoma in warm water in the shower (no soap). Have a little station in your bathroom to keep all your supplies readily available. If the whole process feels gross to you, get some latex gloves to wear, it helps a lot! Just remember, your ostomy does not define you! Its likely you have an ostomy because it’s saving your life! Love yourself, be open with others, and embrace the change." Heart Force Warrior, Portland, OR
Perhaps this site will help you as you learn more about living with an ostomy.
Home Health Care - Caregiving
If you're the one holding the role of a caregiver, we applaud you! It can be an emotional, tumultuous experience. However, it can also be a gratifying and special to experience such an intimate expression of care with the one you love. Perhaps you're looking for some in-home respite so you can get a break from 24/7 care or perhaps you feel your caregiving skills would increase by learning CPR. The needs are vast as a caregiver. We've compiled some resources that will aid you in your process as you learn how to care for your loved one.
Home Care Association of America - A resource that will direct you to licensed agencies who are members of the Home Care Association of America. They provide reputable in-home agencies who can be located with a provider "search by zipcode" feature. We recommend interviewing and executing thorough research before allowing anyone into your home.
We've provided a list of questions to consider when hiring a respite care provider. You can print it off here.
AAA - Each county represents an Area Agency on Aging. This is a government agency that directs people to all appropriate care options, funding sources, etc. They are in charge of giving out resources and knowing options for folks whether they be private pay or Medicaid eligible.
American Heart Association - AHA offers CPR for your family. It's true when they say, "You can never be too careful." You will find they update CPR techniques as science and health research expands. You can never be prepared enough to save someone you love.