CARE For The Caregiver

Caring for a loved one is stressful, tiring, frustrating and also a very important and much needed role. It is job that you learn on the go. There is no ‘right’ way and it is a responsibility that requires constant adjustments. Most caregivers will also tell you, it is a role that comes with a lot of judgment.

 

As a caregiver, I admit to putting myself on the back burner many times. The more I did it, the more everyone suffered. I would feel extreme guilt for wanting to see my friends, go to a movie, or just have some me time. Outsiders always seemed to think I wasn’t doing enough, had their opinions on what I should be doing instead, however those that spoke out were never willing to show up and help.

 

What I have learned in my years of caregiving is that you cannot be an advocate for your loved one if you are not taking time for yourself. You are important. Your health is important. As the saying goes, you have to put on your oxygen mask first before you can assist someone else with his or hers.

 

 

The National Alliance for Caregiving has stated that more than half of all caregivers say they do not have time to take care of themselves, and just under half said they if they do, they are too tired to do so. 

 

It is important for family caregivers to find a personal routine that will elicit balance and recovery for one’s self. This will vary from individual to individual, and there is no right or wrong way. You have every right to focus on yourself at times while being the ringleader in this circus called caregiving.

 

Below are some ideas to help ease the pressures caregivers are under:

 

  1. Write: It is important to have an outlet for the stress and heartache that is endured each day while also remembering the positives that occur. Try writing down 1-3 things that you are grateful for at the start of each day. In the evening, reflect on the day. This is your chance to let it all out. And if possible, write something happy or funny that occurred during the day that will lighten the mood.
  2. Nutrition: Those we care for tend to be picky eaters if they still have the ability to consume food. Try quick, simple healthy meals that are easy to put together. I recommend Clean Eating for Kids. The recipes are easy to make and reminds our loved tend to revert back to wanting foods that remind them of their youth. Also, drink lots of water. It is easy to get caught up in caffeinated and sugary drinks, but water is so important to our organs, energy levels and overall health. Try adding some flavor to your water, this will also help your loved one stay hydrated.
  3. Set Boundaries: No your limits and don’t sway from them! If there is a family member that is on your case, limit their visits. (Hard to do but a must). This also means know when to ask for help. If something is out of your scope, or too much, ask someone who is capable and has the time. It is a difficult to ask for help but people are not mind readers, and the ones who dive in to assist you may surprise you.
  4. Movement: Many people neglect exercise because it can seem time consuming, or require too much energy. If you can get 20 minutes of activity in 3 times a week while your loved one is sleeping, watching TV etc. you will feel so much better. Overtime your energy will increase. You can even break those 20 minutes up into 5-10 minute increments throughout the day.
  5. Sleep: One of the most challenging aspects of caregiving. You hardly get any but if you can have a few thing you can do at night that help calm your body and mind the sleep you get will be so much more refreshing. Things to try; baths or aromatherapy, candles and 5 minutes of reading or soft music, meditation, and/or a cup of tea.

 

The goal of these self-care tips is to allow you to be more patient, less frustrated, and less resentful. Without these small recharging moments, the caregiving role can have the capacity to burn you out and leave you sick, depleted and unable to care for the one you love.

 

It is important to remember that caregiving does have its upsides too. There is an intimacy and deep bond that occurs with family caregivers that is not present in any facility. You know your loved one better than anyone else. You also can exchange untold stories, learn lessons about life, and feel a deeper love when that loved ones recognizes that you are there for them and only them.

 

There will be hard times but appreciate the loving experiences along your journey.

Fab 5 Friday: 5 Things I Cherish When Visiting My Father

webmail-motivated-fitness-8If I am lucky, my schedule allows me to visit my dad once a week.

 

I have always been a daddy’s girl. He was the parent that listened, the one that hugged, wanted to talk, play catch, and would watch whatever silly show I put on just to spend time with me.

 

Many of those things I took for granted but now that he has been in a full time care facility over an hour away (without traffic) I embrace the little glimpse of caring and remembering that appears when the Alzheimer’s is momentarily suppressed.

 

Here are some of the things I am grateful for when I am able to spend time with him:

 

 

When he remembers I am his daughter. He still knows I am Tiffany and I am dreading the day when that comes to an end. For now, every visit he is excited to see me and still calls me by my name. Often he doesn’t know how to introduce me. He can’t remember if I am his brother, his wife or sister. But the days he does remember, the days he calls me his daughter, light up my heart.

 

Our walks on the patio and sitting in the sun. My dads facility has a large outdoor area. One of the things we always do is walk around the patio and he like to count the doves and the chickens that are in the cages outside. Every time he tells me that one is missing and then points out one that is a ‘bully.’ It is nice to be able to get out and walk around with him. I miss our walks near the beach or even just down to the shopping center. At least we are still able to get out into the open air and enjoy nature.

 

The gossip he fills me in on about the people in his facility. I am pretty sure it is all made up, but nonetheless, it is still entertaining. I often wonder if he is telling me old stories that he remembers from when he was younger.

 

I LOVE to hear him talk about the Giants. The San Francisco Giants hold a special place in the hearts of the Gustafson’s. It is a team that brought us together through tough and scary times. It is a team that we celebrated birthdays and Mother’s and Father’s Day’s with and knowing those days are long gone it makes me smile when he wants to talk about the Giants and their season. Granted they do not play the games at his facility, but he still asks and wants to know even though he may not remember a few hours later.

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When he walks me to the door. Well, sometimes. There are days when it is heartwarming and days when it breaks my heart. He always wants to walk me to the car, make sure I am safe and that the car is running correctly. Unfortunately, he is not able to leave the facility with me. He doesn’t understand why and gets upset when they wil not allow him to leave. There are some days I have to sneak out when he is not looking but I embrace the days when we will walk me to the front door, give me a big hug, and tell me how much he loves me. Those are the good days!

Caregiving: The Ups, Downs and the In between (Part 1)

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I am a caregiver. I am a daughter and only child of a 75-year-old man who is battling Alzheimer’s.

Alzheimer’s is the only cause of death that ranks in the top 10 diseases in the United States which cannot be prevented, cured or even slowed.

In 2014, family members provided almost 18 billion hours of unpaid care to their loved ones.  While there are plenty of resources out there to help you ease the tension when one has to revoke driving privileges from their loved one or how prepare your home to provide a safe environment, there is very little emphasis placed on the relationship shift that happens due to this ugly disease.

All of a sudden the relationship you once had with that loved one is gone forever. You may experience a glimpse of it here or there that leave you hopeful but soon you come back to reality as you realize your relationship with your loved one and this disease cannot be fixed. There is no work that can be done to improve it, you have to learn to develop a new relationship and that takes time. Being a caregiver, you do not have a lot of spare time to work on new things.

Caregivers themselves experience an emotional rollercoaster. There is anger, resentment and loneliness.  There is a grief that accompanies the loss of shared stories, experiences and activities. There is also anxiety. Who will care for your needs while you are aiding for someone else?  What is tomorrow going to be like?

webmail.motivated-fitness-21For me, all of a sudden the man that raised me had no idea who I was. He now refers to me as his brother.  One day I brought out a family photo album to bring back old memories and I told him I am his daughter. He became extremely agitated and began calling me a liar and saying I was “F’ing crazy.” And for those with experience with people with Alzheimer’s, once they are fixed on a subject they don’t let it go. I was heartbroken. I had always been daddy’s little girl. We used to fish together, go boating, play catch and take our dog out for walks. We would have game nights and dance to 50’s Dance Party when it was on TV.  Eventually I was able to distract him and move on to another subject. And now those memories are moments that I share only with myself.

I won’t discount who my father is. He is still a wonderful man, jovial most of the time, who walks around urging everyone to keep smiling. But on bad days, when things are out of routine, when he tries to do something himself or remember something, he gets frustrated. Those are bad days.  It breaks my heart. And I am the one who is there day in and day out to experience it.

This new limit in our ability to communicate deeply is the greatest loss in our father-daughter relationship. Simple conversations are now unnecessarily complex.

Almost everything I read advises caregivers not to get upset. But every day, dealing with loss after loss whether they misplaced your toothbrush, grabbed your car keys or took apart a project you are working on, we are encouraged to keep our cool so we don’t upset them. This can make a caregiver unravel.

Until recently I felt disruption with in me. After caring for my mom who lost her battle with cancer and going right into caring for my father, I felt a huge void in my life. I had difficulty remembering things, I didn’t know if I was coming or going, I was stressed, I had trouble concentrating, and I averaged less than two hours of sleep at night. My work suffered. My relationships suffered.  I felt alone and misunderstood.

webmail.motivated-fitness-31I do realize I am more fortunate than most. I have been able to write for two different ALZ support organizations. I can share my experiences, lessons learned and emotions with others so they can also not feel so alone. I  developed a friendship and working relationship with the author of Learning to Speak Alzheimer’s. I began to attract clients who have been through a similar situation. We have formed a safe community to openly talk about issues.

All of this has given me the strength, tools, and resources to make sure that my dad is getting the best care. I now feel empowered to care for my father even though it is not easy nor fair.

This disease is ugly. I thought cancer was bad, and believe me I still hate cancer, but watching someone be physically alive and healthy with no recollection of the life they lived for the past forty years is dreadful. I will continue to share my story and experiences to bring more awareness to the disease, to help caretakers get through this process.

Stay tuned caregivers…WE GOT THIS!