Long Distance Caregiving – A visit home

A little bit of your heart breaks when you witness yet another milestone in your parent’s decline with Alzheimer’s disease. Such was the loss for me when I traveled to visit my mom in January earlier this year. Mom had a mild stroke in early January and spent a week in the hospital. The neurologist said she would breeze through this one as she had no lasting visible affects. It was time for me to visit though, knowing ay 89 her next stroke may rob her of much more or that the progression of the disease would move more quickly. Spending time with her and giving my sister as her primary caregiver a bit of a break was important and more pressing now even though I don’t like Buffalo in the winter. 

I arrived late at night so didn’t see Mom until morning. Her routine is to get dressed before she goes downstairs as the stairs are a challenge so once a day is enough. She constantly asked, “What am I supposed to be doing?” Her disorientation of purpose was obvious. She’s always been a “doer” and never wasted a minute. She always had a needle and thread or was crocheting or reading a good book. Now the sewing machine sits idle when there was barely a day she didn’t use it when my seven siblings and I were growing up. It was easy to give her something to do though, help me fold the laundry, or peel the apples for a pie (I made 6 while I was there), or let’s play solitaire. She could help pin a pattern for some doll clothes to be cut out for the great grandchildren and even cut a few out all the while just listening to me chatter to engage her in the conversation. She no longer does the puzzles in the daily paper, too difficult she says. So instead I did them but asked her for help with answers I knew she could provide.

I treasured the week I spent with her. My sister was able to run errands and visit with her grandchildren. I was able to install a new handrail to help mom steady herself on the stairs, hang new drapery hardware to replace the broken rod, and any other task my sister needed help with. We were able to get to Mass, Mom’s first since the stroke. I was so happy she could sit with the choir and sing with them. I could hear her voice among the others and it brought me such comfort. She used to sing to us as she rocked us to sleep and then with the grandchildren. Her voice will always be in my head. 

The milestone of decline that weighed heavy on my heart was that in the 7 days I was there Mom could not call me by name. She knew I was a daughter, one of six, she knew I belonged, yet there was this…absence. I longed for the sound of my name yet never heard it. Although not hearing was an obvious omission to me what really mattered was we spent 7 wonderful days together. I helped her get dressed, I played her favorite music, and I showed her pictures of a recent trip to Ireland. We laughed an reminisced looking at over 1200 old pictures I had converted from slides to digital photos. Pictures she hadn’t seen in over 26 years. Pictures of her holding her babies, all 8 of us, and it was there she knew all the names of the children. It was a time I will always treasure.


-Barbara Auten, Executive Director

I didn't know I needed...

Recently, I attended a TLC for Caregivers event at Ruffino’s. A TLC for Caregivers is an event sponsored by the Junior League of Baton Rouge with a goal of giving the caregiver and the individual with Alzheimer’s an opportunity to socialize in a safe and welcoming environment. At this event I spoke to a caregiver who has just begun to utilize resources and programs offered by Alzheimer’s Services. She stated, “I didn’t know I needed Charlie’s Place.” I starting thinking about statements made by caregivers beginning with, “I didn’t know I needed …” Many times while speaking with a caregiver about their loved one’s care, a caregiver puts up a road block when they say, “We are not ready for that yet.” My question is when will you be ready or how can you know when you need anything?
 

• The statements below are statements from a caregiver who is approaching a dangerous stress level:

1.  I don’t care about getting together with the neighbors anymore. 
2. What happens when he needs more care than I can provide? 
3. I just don’t care anymore. 
4. I can’t remember the last time I felt good.

•  Questions to ask yourself, so you may be aware of your stress level

1. At the end of the majority of days, have you felt like you couldn’t make it through another day? 
2. Is your health at risk or beginning to suffer because of your caregiving responsibilities? 
3. Have you lost privacy or the ability to organize and run your household? 
4. Is there frequent conflict between household members related to caregiving issues? 
5. When you get a break from caregiving, do you still feel overwhelmed and exhausted?

Be realistic when considering the stress from caring for a loved one with Alzheimer’s. An activity that may assist in evaluating yourself may simply be a list. For example, use the above list of statements as a check list, if you find yourself making these statements the majority of times then make a deal with yourself that at that time you will call Alzheimer’s Services for their opinion about the next step that can be taken. It is also a good idea to use “the buddy system.” The buddy system should involve someone you talk to on a regular basis about caregiving. A buddy that will be able to say, “I hear you saying those negative comments, maybe you should think about making some changes so you can rest.” My goal is that each caregiver be able to evaluate their stress level and change the statement, “I didn’t know I needed” to the statement, “I knew I needed help when …”

Alzheimer’s Services is dedicated to helping you give the best care to your loved one. We are available to simply listen to concerns, answer questions, educate, and find ways a caregiver can reduce stress involved in caregiving or absolutely anything else you may need to provide the best care to your loved one.

WHEN YOUR LOVED ONE CAN NO LONGER LIVE INDEPENDENTLY

As we age, we may need extra help at home or need to move to a place that provides care.  As a family member or caregiver, you may need to help your loved one in the decision process and during the transition.

How do you know when your loved one can no longer live on his or her own?

Sometimes an illness, injury, or changing health will determine when a person needs to make a change. The need for change may also happen gradually over time. Signs that may indicate the need for a change include:

• Having difficulty eating, dressing, bathing, or using the toilet
• Forgetting to take medications or taking too many
• Behaving in ways that could be hurtful to themselves or to others, such as forgetting to turn off appliances
• Wandering from home or other signs of memory loss.

How do you talk about making a change?

Accepting change can be hard. Try being open and honest about what you see.

• Clearly state why you think independent living is no longer a good idea
• Listen to the person’s concerns; Reassure him or her you will do what you can to address those concerns
• Include your loved one in making the decision about where to live, if possible

Where should your loved one live?

When a person can no longer live alone, help him or her decide what type of living situation is best. Some options include:

• Staying at home with additional assistance
• Moving in with family or friends
• Assisted living communities
• Residential card facilities
• Skilled nursing facilities

What if your loved one resists making a change?

• Give the person time to get used to the idea
• Encourage the person to talk about how he or she feels
• Listen to concerns.  He or she may be worried about not liking the new place, about finances or about what will happen to the family home and belongings
• Provide clear, honest answers
• Ask for help from friends, family, a doctor or another respected person
• Ask the person to agree to a trial period

What can you do to help make it a positive move?

• After a move, ask friends and family to visit often, call, or send cards and letters
• Reassure the person; talk about the positive reasons for the move, such as security, comfort, companionship or professional care
• Allow the person time to adjust

What is Good Time Management?

It is simply three things. Working Smarter. Using Time Effectively. Coming Out On Top. Great time management means being effective as well as efficient. 

People don’t plan to fail, they fail to plan. 

Avoid being in the group of 90% that only gets 10% done. Be in the 10% that gets 90% done.   How do we do this? First let’s discuss some common time management “slip ups.”  Once we discover the slip ups, I’ll show you how to fix them.

1.) Failing to Keep a To Do List. Do you ever stop and tell yourself, “I know I’m forgetting something! What is it!!!?” To Do lists help you prioritize the tasks on your list. I like to use a white pad or notebook. I write the date in the upper right hand corner. I will start with #1 and list the name of the task. If that task entails a lot, I will then add A. B. C. so that I thoroughly list each thing that has to be done. When I complete something off my To Do list, I use a yellow highlighter. That shows me, “this is done, move on to the next task.” I like to keep some of my To Do lists so that I can go back and reference them. Just simply file them in a folder. 

2.) Not Prioritizing. Sometimes, it's hard to know how to prioritize, especially when you're facing a mountain of seemingly-urgent tasks. However, it's essential to learn how to prioritize tasks effectively if you want to manage your time better. Using the Urgent/Important Formula is an excellent tool. 

• Important activities have an outcome that leads to the achievement of your goals.
• Urgent activities demand immediate attention, and are often associated with the achievement of someone else's goals. Urgent activities are usually the ones that we focus on because they demand attention and the consequences of not dealing with them are immediate. 

3.) Failing to Manage Distractions.  If you want to gain control of your day, and do your best work, it’s important to know how to minimize distractions and manage interruptions effectively. There are going to be distractions, whether it is a colleague that needs assistance, a Walk-In that seeks help for their loved one, phone calls, or emails.  

•  Email: While email is incredibly useful, it's also one of the biggest work distractions we face. Many of us could spend entire days simply reading and responding to emails. The days that you have a big project to work on, close your email entirely or adjust the visual settings that distract you. If you have heavy email traffic that demands constant action, you may want to schedule specific times to check and respond to emails. 
• Phone calls:  When a call comes in for you, if you are hands and arms deep in a project, ask your secretary to take a message or let her know you will call the person back in 10 minutes. Be sure to return that call in the time promised…by simply making a quick note on a Post-It. Then, you can happily go back to your area of concentration. 
• Visitors. To minimize people coming into your office, close your door. A closed door usually lets others know you need some quiet time to concentrate.   
• Disorganization: A disorganized desk or surroundings can be a distraction.  Learn to keep a desk that is orderly so this is not a distraction to you. 
• Tiredness: Getting a good night’s sleep is essential to a productive work day. 
• tay Hydrated: Not being hydrated can actually lower your blood pressure, causing you to feel tired and have foggy thinking. 
• Eating Healthy: A diet rich in fruits, vegetables, and whole grains is always beneficial.  Foods affect how we feel and perform.   

4.) Taking on Too Much. Are you a person who has a hard time saying “no” to people?  If so, you probably have too many projects and commitments on your plate. This can lead to poor performance, stress, and morale. To stop this, learn how the subtle art of saying yes to the person but no to the task. “Anne, I’d really love to help you with this project today, but the monthly newsletter is due in two days, so, I must focus on this today." This helps you be assertive while still maintaining good feelings within your team of co-workers.

5.) Procrastination. We know procrastination occurs when you put off tasks you should be focusing on now. We are all guilty of doing this. Find what it is that is causing you to procrastinate. Learn to break down your bigger projects into manageable steps so that it’s easy to see everything you need to get done. Instead of taking on one big project and feeling overwhelmed, devote a certain amount of time to it, then go to your other project. Doing this can stop feelings of overwhelm.

6.) Ineffectively Scheduling Tasks. We all have different rhythms (times of the day) when we feel more energetic and productive. You can make the best use of your time by scheduling your high value work during your peak time and low-energy work (like returning phone calls or emails) during your down time. 

7.) Not Taking Breaks. Never think that taking a break is “wasting time.” It is impossible for anyone to focus and produce high quality results without giving their minds time to rest and recharge. Breaks allow us valuable down time which enables us to think creatively and work effectively. Sitting or standing for long periods of time is not good for the body either. So, remember to take a five minute break every hour or two. Also, make time for lunch or snack breaks, whichever you are used to. You cannot drive a vehicle that has no fuel!

8.) Not Setting Goals. People with goals accomplish 80% more than those who don’t have them. Setting goals helps develop clarity. It’s an important step in creating a life that you love and want. Goals are like our dreams! In setting goals, you get what you want instead of settling for what just comes your way per se. 

Develop good time management skills, and you are sure to succeed!