Patience is a virtue, or so they say...

Let's be real for a moment, sometimes the stresses of caregiving come down to those small things that no one else would really pay attention to or be bothered by. Maybe it's because I'm "new" to this whole caregiving situation, or maybe it's because I've been doing it since I was a teenager... I find the more daunting the task, the more I become frustrated with it. It would be easy for me to just let go and let God, but what does a caregiver do for themselves when everything seems like it's making them crazy?

I find visiting Caregiver.org to be helpful, for tips on being just that, a caregiver. There is no manual that comes along with you put your life and everything you do on hold for loved ones who are touched by a horrifically devastating disease, which they had no control over. I forget, this is not what we signed up for. None of us wanted these cards that we were dealt. With that being said though, how do we make it easier on ourselves rather than more and more difficult?

Caring for my brother, there is not patience from either of us. He is very much in the stage of "I want this now" "Do this for me now" "Get it for me now" "Make it for me now"... Whether it is 6:00 AM and I am still asleep, or if I am in the shower, or getting dressed, or at midnight. He doesn't mind when he asks me, just as long as it gets done for him at that exact moment.

I find as a caregiver I have lost a lot of who I am, but I do need to remember that my dad and brother have lost all of who they are or were... Caregiver.org says, "Caregiving can be tiring and stressful. When you're caring for others, it's easy to forget to care for yourself. While it may be difficult to find time to focus on yourself and your needs, it is very important that you do so to prevent frustration and burnout." Is this selfish? Yes, I do get breaks and am able to spend time with friends a couple days out of the month and switch off with my mom who is also a stay at home caregiver. But when I'm away I can't help but think she needs me home to help as I know how stressful it can be to do it all alone.

Caregiving.org suggests modifying your thoughts:

As you take time out to collect your thoughts, try rethinking your situation in ways that reduce frustration. How you think often affects how you feel. Of course, feelings of frustration arise from difficult circumstances. If, however, you analyze your response to a frustrating situation, you will usually find some form of maladaptive—or negative—thinking that has the effect of increasing your frustration, preventing you from looking at your situation objectively, or finding a better way to deal with it.
Below are six major types of unhelpful thought patterns common among caregivers. Following each unhelpful thought pattern is an example of an adaptive—or more helpful—thought that can be used as self-defense against frustration. Familiarizing yourself with the unhelpful thought patterns and the adaptive responses can help you control your frustration.
Over-generalization: You take one negative situation or characteristic and multiply it. For example, you're getting ready to take the person in your care to a doctor's appointment when you discover the car battery has died. You then conclude, "This always happens; something always goes wrong."
Adaptive response: "This does not happen all the time. Usually my car is working just fine. At times things don't happen the way I would like, but sometimes they do."
Discounting the positive: You overlook the good things about your circumstances and yourself. For example, you might not allow yourself to feel good about caregiving by thinking, "I could do more" or "anyone could do what I do."
Adaptive response: "Caregiving is not easy. It takes courage, strength, and compassion to do what I do. I am not always perfect, but I do a lot and I am trying to be helpful."
Jumping to conclusions: You reach a conclusion without having all the facts. You might do this in two ways:

1. Mindreading: We assume that others are thinking negative thoughts about us. For example, a friend doesn't return a phone call, and we assume that he or she is ignoring us or doesn't want to talk to us. Adaptive response: "I don't know what my friend is thinking. For all I know, she didn't get the message. Maybe she is busy or just forgot. If I want to know what she is thinking, I will have to ask her."
2. Fortune-telling: You predict a negative outcome in the future. For example, you will not try adult day care because you assume the person in your care will not enjoy it. You think, "He will never do that. Not a chance!" Adaptive response: "I cannot predict the future. I don't think he is going to like it, but I won't know for sure unless I try."

"Should" statements: You try to motivate yourself using statements such as "I should call mother more often" or "I shouldn't go to a movie because Mom might need me." What you think you "should" do is in conflict with what you want to do. You end up feeling guilty, depressed or frustrated.
Adaptive response: "I would like to go to a movie. It's okay for me to take a break from caregiving and enjoy myself. I will ask a friend or neighbor to check in on Mom."
Labeling: You identify yourself or other people with one characteristic or action. For example, you put off doing the laundry and think, "I am lazy."
Adaptive response: "I am not lazy. Sometimes I don't do as much as I could, but that doesn't mean I am lazy. I often work hard and do the best that I can. Even I need a break sometimes."
Personalizing: You take responsibility for a negative occurrence that is beyond your control. For example, you might blame yourself when the person in your care requires hospitalization or placement in a facility.
Adaptive response: "Mom's condition has gotten to the point where I can no longer take care of her myself. It is her condition and not my shortcomings that require her to be in a nursing home."
Using the "Triple-Column Technique": Unhelpful thought patterns are usually ingrained reactions or habits. To modify your negative thoughts, you will have to learn to recognize them, know why they are false, and talk back to them.
One helpful way to practice using more adaptive thinking processes is to use the "triple-column technique." Draw two lines down the center of a piece of paper to divide the paper into thirds. When you are feeling frustrated, take a personal "time out" and write your negative thoughts in the first column.
In the second column, try to identify the type of unhelpful pattern from the six examples above. In the third column, talk back to your negative thoughts with a more positive point of view.

I know sometimes it may seem like this blog is all about the frustrations a caregiver feels and is going through, maybe it sounds like I am complaining about the choice I made to become a stay at home caregiver, or perhaps I'm just venting to an audience that may or may not know what I am talking about or going through... I just want to be able to share my thoughts and story with you, my reader. Perhaps this blog will help you, or give you some view into the life of an HD caregiver. No one said it would be easy, but I must remember when I want to rip my hair out that patience is a virtue, or so they say...

The Entrenched Caregiver

From Caregiving.com

I am helping a family member or friend.
Who are you?
Your involvement with your caree is almost daily–if not constant. Your caree may live with you–or your involvement means that your day is structured to be available to your caree. You begin to wonder, how much longer can you live this way? Your mood is sometimes upbeat–you’re proud you’ve been able to provide such wonderful care and make decisions that support your caree’s best wishes–and sometimes melancholy–why you? You’ve been mourning the loss of your caree’s abilities and functions and often long for the days before caregiving. And, you’re tired.
Your Keyword: Receive
–Receive help–from anyone who offers;
–Receive breaks from caregiving;
–Receive support.
Your Challenge
To find the support and strength to continue.
Your Purpose
To develop a routine, create a familiar schedule for both yourself and your caree. A routine will help you deal with the overwhelming stresses and responsibilities that wear you out. A routine will provide comfort for you and your caree–this stage may be the most difficult for both of you. The changes you prepared for in Stage I and II are now a reality–you have become something of a lifeline to a family member or friend.
In addition to your caree’s routine of care, create a routine for yourself. In your routine include: Time for the unexpected; a ritual which begins and ends your day; and a “healthness” activity that nurtures your spiritual, emotional, physical, mental needs.
As an “entrenched caregiver,” what can you do?
1. Determine your limits in your day and in your role.
How long can your caree remain at home? What’s your comfort level in providing care in your home? For instance, some family caregivers feel uncomfortable providing care when their caree becomes incontinent. Others determine they can provide care at home as long as insurance or Medicare benefits offset some of the home care expenses. Others feel they can provide care as long as their other family members, like spouses and adult children, will put up with it.
Just as important as understanding your limits in your role is recognizing your limits during your day. Consider:
–Which tasks and responsibilities feel like a struggle?
–What times during the day do you feel the greatest amount of stress?
–When do you find yourself running late, losing your temper, scrambling for a solution?
–What do you find yourself dreading or hating?
–When do you find yourself in a tug-of-war with your caree?
–What times of the day are tough for your caree?
–When during the day does your worry about your caree intensify?
When you understand your limits, you can look for help to manage what’s beyond your limits. Understanding your limits will ensure you, your caree and your family will stay in a safe place.
Everyone has limits. What are yours?
2. What are your caree’s limits?
Understanding your caree’s limits will help schedule your day and organize your help. Limits will change regularly, so be aware of change in tolerance and fatigue. Not sure how much help to schedule? Add more than you think. You can never have too much.
3. Continue regular breaks.
Consider annual weekly breaks–investigate short-term respite stays in your community’s nursing homes. Or, ask relatives to take over the caregiving role for a week or two every year or every two years. Continue to take daily, weekly and monthly breaks. Keep up with your own interests and hobbies as best you can. Take time to enjoy the paradise you built in Stage II.
4. Use your Solutions Fund.
Make deposits and take withdrawals, using the money for boredom, breaks and back-up plans.
5. Keep up with a support system–a caregiver’s support group or empathetic and understand family members or friends.
6. Continue to learn about your caree’s illness or condition.
What’s next for your caree? Are you up to the next steps in his or her illness?
7. Increase help as your caree declines.
Become comfortable with adding more help as more help is needed. You may think, “I’m okay keeping the level of help as it is.” Unfortunately, keeping the level where your caree was rather than where he or she is will hurt both of you. Note the struggles in the day, then work to add help for you and your caree to manage the struggles.
8. Manage the budget as much as you manage the care.
As care needs increase, so does the budget. When you caree has funds to pay for about 18 months in a nursing home, then take note of the situation. This is the time to consider nursing home placement, when your caree’s funds will afford the best choices. Hold a family meeting, tour local facilities, consult with professionals, such as a geriatric care manager. You may decide this isn’t the time to decide. That’s okay. It’s important to be aware that sometimes the budget determines the decision on where a caree continues to receive care. It’s most important to be aware of your choices and to make the one that’s right for you and your caree.
If you care for your spouse and consider nursing home placement, know that a certain amount of your assets will be protected and that you will not have to deplete all your assets to pay for your spouse’s care in a nursing home. Visit Medicaid.gov to learn more.
9. Continue writing in both journals—yours and the other about your caree.
10. Forgive yourself for your bad moments and bad days.
They will happen. After they do, give yourself a clean slate to start over.
11. Set boundaries which protect: Your Time; Your Values; Your Well-being, Your Priorities; Your Self.
Examples of communicating boundaries include:
–“I’m taking a two-hour break after lunch. I have everything that you’ll need set up in the living room. Thank you so much for helping me enjoy this time. I’m so grateful for your support.”
–“I’m uncomfortable with the tone of our discussion. Let’s table our talk until tomorrow.”
–“I’m booked, so can’t handle that request. Thank you for thinking of me.”
12. Give you and your caree room for your difficult moments and bad days.
When you’re having a tough time, simply say: “I’m having a bad day. I’m taking a few minutes for myself.” When it’s your caree’s turn, say, “I’m sorry you’re having a bad day. I’m going to step away for a few moments.”
13. An apple a day…
What’s your apple in this stage? You may feel tempted to sacrifice your apple in this stage. Your apple can’t be sacrificed. Your apple is what makes you feel normal, like yourself. Keep it.

Don't throw stones if you live in a glass house.

As you may know, not only am I my brother's caregiver and a helper with my dad, but I am also the Chair for the HDSA New Mexico Affiliate, Peer Leader for the support group, and local Advocate for the HD Parity Act. Recently, my family has gone through a "break-up" with who we thought was a close friend who is also an HD caregiver.

When a caregiver verbally attacks another caregiver, you cannot help but think that perhaps they are having "one of those months", but to go past and continue the torture by writing an open letter to our family about how pathetic, cowardly, and selfish we are I have to put my foot down.

Since 2009, when Bryan was diagnosed with HD, we have dedicated our lives to helping local New Mexican families with HD/JHD through support, education and awareness. We had taken it upon ourselves when others stepped away to step up at lead the support group or it would be lost to all those who needed it. We've brought our very own HDSA recognized affiliate to the state, something we had never had before. Why is this important, because for the first time New Mexican's (PHD's, family members, caregivers, spouses, at-risk, professionals, and doctors) had volunteers in the state who are dedicated to making the lives of New Mexican's better while they struggle with HD.

We have donated 100's if not 1000's of dollars and hours of our own time to provide education days, go through training seminars, webinars, and conference calls to be better at what we do. And each time it felt like it was too much to deal with, go through, and put up with we kept going. But, take away everything I do and let me speak frankly as a person who just so happens to have HD in my family, how dare you throw what we've done back on our face. To be there for a person and a family who is new to the struggles of HD, to have late night phone calls, lunches, dinner dates, support groups and doctors appointments together and have it all be thrown back at us like we are nothing makes me think, as I've been telling my mom all night, one bad apple can ruin the bunch. Having one family make us feel like we are nothing discourages us from moving forward in hopes to help more New Mexican families, makes us feel what we are doing is not good enough, and that continuing on is not as worth it as we thought.

Not only do we have two PHD's at home who we have chosen to care for full-time because we have seen first hand the horrible conditions and treatments in nursing homes, and not only do we have bad days, days in which when at support group we cannot help but cry and whine and complain about our own circumstances, not only do we feel like the world is crashing around down on us, and not only do we feel like we are the only ones going through this... but we understand because we are not the only ones going through days like this, or feeling like this, we need to continue to be there to support others who are feeling this way too.

Don't disregard the help we've given you and to dozens of other families because you are having a hard time dealing with the stresses HD brings with it. We are here because we have seen HD first hand, from my grandfather, to my father and to my brother. When it comes to HD, my whole life has been dedicated to understanding what HD is from all angles and how to cope with it.

No, I may not be the best Peer Coordinator for the support group, that is why I bust my butt to fundraise so we can get a paid facilitator to do that job. No, I may not be the best advocate for my fellow New Mexican's with HD and their families, but unless other's step up I'm all you've got, and perhaps I am not the best Affiliate Chair, but honey there were none before me... I'm am doing the best I can with the little help from you and those like you I get, which is none. WE ARE DOING THE BEST WE CAN as caregivers, you are not in our shoes, you do not live with us, you do not come out to give us respite, one day you'll will know the struggles we face...

And this tid-bit is long over due, THINK YOU CAN DO BETTER, BE MY GUEST!