Welcome to our Care & Share blog! We’re running a social media-based campaign, called #iCareforCaregivers, to raise awareness about caregiver isolation and stress. Through this campaign we hope to encourage our community to care for caregivers. Check out the official #iCareforCaregivers webpage at pagerobbins.org/icareforcaregivers. You’ll find more information as well as links to blog posts and stories related to caring for caregivers. All of our blog posts this fall will be about caring for caregivers.
Care & Share
March 2, 2017
Choosing a Residential Placement
Being a caregiver is incredibly stressful: addressing daily care needs, managing bills, going to medical appointments, making meals, and keeping up the house. In addition to these things, making decisions about your loved one’s care is difficult. Caregivers spend a great deal of time stressing over if they should place a loved one in a residential care facility and wondering which facility is the right one.
If you’re feeling overwhelmed by a care decision, take a breath. We’re here to help. These are our best tips on choosing a residential placement. If you have questions after reading this, be sure to give us a call (901.854.1200) or stop by, we would be happy to answer questions and provide support for you and your specific situation.
Step 1: Decide your breaking point.
The big question: “When is the right time to move my loved one to a residential facility?”
There’s no one answer to this question. In our experience, most caregivers have a breaking point in what they can manage at home. For each caregiver, that breaking point is different.
Some examples of stages your loved one might reach that could be a breaking point:
- Not sleeping at night and disrupting sleep for the rest of the household
- Hoarding becomes excessive
- Choking on meals consistently
Choose YOUR breaking point. There is no right or wrong time other than waiting too late. When you wait too late, you suffer and don’t manage your own self-care. As a result your loved one suffers because you can no longer provide adequate care.
Step 2: Determine your loved one’s appropriate level of care.
How do you know what level of care is appropriate – traditional assisted living, memory care, nursing home? We suggest asking your loved one’s physician, consulting with a geriatric care manager, or having a facility admission coordinator assess your loved one to make appropriate recommendations.
Step 3: Do your research.
Ask around. What experience have others had with the facilities you are considering? Also, think about location and cost. If you’re planning to visit your loved one often, it would be wise to choose a facility that is within reasonable driving distance from home and/or work.
This is another step when a geriatric care manager may be of great help to you. He or she can help you narrow down the pool of facilities to consider.
Step 4: Take a tour.
Go out and look. Tour several facilities to see what is out there. It is always best to know about the options in the area, so you can make an informed decision when/if the time is right for you.
Take both scheduled and unscheduled tours. Show up unannounced (maybe at a mealtime or on a weekend) to see how things are when staff are not prepared for you to be there. It is important to have a scheduled tour as well. Scheduled tours ensure that the correct staff person will be available to give you the information you need. Understand that not every staff member will be able to answer your questions, so be sure to ask the right person.
When taking a tour, there are lots of things to consider and observe, but don’t stress too much. You can always take a second or third tour if needed. When you tour, use your five senses:
- Do you hear staff talking with residents, including them in conversations?
- Is staff speaking kindly to residents and one another?
- Does staff call residents by name?
- Is there music playing? Is it appropriate and soothing music?
- Is the facility nicely decorated?
- Is there natural light?
- Does it look clean and orderly or chaotic?
- Ask for a menu. Does the food look appealing?
- Are people smiling?
- What do you see the residents doing? Are they watching Jerry Springer or something more appropriate? Are they staring off into space, or do you see them engaged in an activity?
- If you have a meal at the facility during your tour (which is not necessarily common), does the food taste good?
- Are the floors sticky?
- Are the tables still sticky from the previous meal?
- Are there items around for the residents to use? Games, puzzles, sensory items?
- Is staff providing physical reassurance and attention to residents, such as a hug or a pat on the arm?
- How does the facility smell? Do you smell lunch cooking, or does it smell like bleach?
- Is there an odor of old urine? If someone has just had a bowel movement then there will likely be an odor, but it should not be a permanent smell.
The best facility is not necessarily the newest/most expensive facility, and the worst facility is not necessarily the oldest/cheapest. There is no one facility that is the best for everyone. Each person and family is different. Different places for different needs.
Bonus Step: Be an advocate.
Once you have chosen a facility and moved your loved one in, know that you are still your loved one’s caregiver. You are still his or her advocate. It is important that you visit, check on your loved one, and make sure that appropriate care is being provided.
November 23, 2016
We all need people in our lives. We all need to feel a connection and be a part of something. This need to belong does not go away when someone has dementia. Recently, we’ve been talking a lot about caregiver isolation with our #iCareforCaregivers campaign, but caregivers aren’t the only ones who are isolated. Often when someone has dementia, social circles shrink (and perhaps even disappear).
Why? Let’s be honest. It can be a bit awkward talking with a person who has dementia. You might not know what to talk about, or that person may say or do strange things. Also, it’s hard to see someone you love lose their abilities and memory.
But here’s the truth: it may be awkward and difficult, but that person needs you. Your friend or family member’s life will be fuller and better with you an active part of it. Those with dementia should still be involved in relational things. It’s important to include them in conversations and social events.
You may be thinking, I don’t know what to say to this person anymore. How do I interact? We’re here to help! Here are our best tips for communicating with someone who has dementia. If you have questions that aren’t addressed here, or you would like advice about a specific situation, please give us a call at 901.854.1200. We would be happy to help.
- Limit distractions. It can be confusing for someone with dementia to participate in a conversation when there’s a bunch of stuff going on at the same time. Turn off the TV, put your cell phone away, and move to a quiet space. It’s best to be in a small group or one-on-one.
- Set a good tone. Your attitude and body language convey a message just like your words do. Smile and make eye contact. Be kind and sincere, gentle but not demeaning. Talk to the person like an adult. Address him or her by name. Use humor when you can.
- Be clear, and keep it simple. Slow your speech and use easy to understand language. If they don’t understand, repeat. If they still don’t understand, rephrase. Use visual prompts to help convey your message. If you need to, plan out a couple of conversation topics ahead of time. If your grandma likes to talk about the lake she lived by as a kid and making pumpkin pie with a special family recipe, you might bring pictures of the lake and the pie recipe with you to talk about those things.
- Remind, don’t quiz. Don’t say: Do you remember when…? Who is in this picture? Who am I? What is my name? If your friend had a broken leg, you would never ask him to run a marathon with you. That’s what you’re doing when you quiz someone with dementia. They physically can’t remember. Also, how do you feel when people ask you questions you can’t answer? You feel bad about yourself. Help your loved one preserve dignity. Set that person up for success. Instead of quizzing, talk about times past. Say something like: That Christmas we went to the Grand Canyon was one of my favorite holidays.
- Suggest, don’t correct. Instead of saying: “You don’t need to wear your heavy coat outside, it’s 85 degrees.” Say this: “Let’s go feel the weather outside and see if you think you need that coat.”
- Avoid saying “No.” Offer alternatives. Instead of saying: “No, you can’t eat lunch, you just ate lunch 20 minutes ago.” Say this: “How about we get a little snack after we fold the laundry.”
- Redirect. If the person gets agitated, overly worried, or stuck on a negative subject, acknowledge the feelings and then redirect. Here’s an example. You are visiting your friend in her home. She says: “The children are just being awful right now. They leave their things all over the house and are out all hours of the night. I just don’t know what to do about them.” You know your friend’s children aren’t teenagers anymore but are grown and live in a different city, but you don’t correct. You acknowledge the feeling and respond with reassurance: “That rebellious phase is tough isn’t it. I think we both went through one of those ourselves, but we turned out okay. Your children sure are lucky to have you as a mom. You’re a great mom.” Suggest an activity, steer the conversation in a more positive direction, or offer a new conversation topic.
- Listen. It may take your friend or family member a while to respond. That’s okay! Take time to listen. If the words aren’t making sense, listen for the feeling behind them. Are they anxious or confused? Provide reassurance. Are they joking? Play along!
- Be present. Even if the person can’t respond, keep talking. Your presence is a sign of love and care. Show your friend or family member that you care and that they still matter.
October 14, 2016
Caregiver Wish List
One struggle that we often hear from caregivers is that they feel alone and isolated. Caregivers say that family and friends no longer come around. One caregiver said, “When we go out to a family event or get together, it’s like we have a bubble around us, and no one wants to penetrate that bubble to come talk to either of us.”
Caregivers say that people will offer to help by saying the usual: “Let me know if you ever need anything.” “Let me know what I can do.” But it never gets past that. Caregivers say thanks but don’t know what to ask for in the moment. Often times, a well-meaning friend or family member doesn’t know what to offer, but they are willing to help if given a task.
Our advice to caregivers: Be specific.
Write out an actual wish list (just like you would write out a Christmas list). What are things you would like for someone to do for you and/or your loved one? The items on this list can free up time for you to have a break from some of your responsibilities or can give you a break financially for things you would otherwise be paying for.
Here’s some example wish list items to get you thinking:
- Deliver a hot meal every other Tuesday
- Make an extra casserole or a double batch of soup
- $ for in-home care
- $ for a day at Page Robbins
- Take loved one to get a manicure while caregiver runs errands
- Visit every other Saturday for a few hours
- Call once a week to check in
- Rake the yard
- Invite loved one over to watch a football game one Saturday
Challenge Time: Be specific. Make out a wish list. Type it up. Write it out. Jot it down on a piece of scrap paper. Decorate it with glitter stars and doodles. Put it in your phone. Whatever works for you! The next time someone asks you how they can help, give them something specific from your list, or give them the whole list and have them pick.
Our advice to family, friends, and neighbors of caregivers: Ask for specifics, and listen.
Rather than: “Let me know if you need anything.” Ask: “What can I do to help you?” Then, listen. If they don’t have a response, encourage them to make a wish list. If the first time you ask, the caregiver says no help is needed, it’s okay to ask again later. Show the caregiver that you are sincere in your desire to help.
Some good questions to ask:
- I made an extra batch of soup. When is a good time for me to drop it by?
- Can I come over to help you with your honey-do list? Change light bulbs? Fix the leaky faucet? I’ve got free time every day around lunch time next week.
- Can the kids and I come over and rake the yard this weekend? It will be a good family activity. We would love to help.
Challenge Time: Ask for specifics. Listen. Encourage your caregiver friend to make a wish list. Keep in mind, it can be hard to ask for help. Be ready to help where and when you can. Check out our recent blog post on 31 Ways to Care for Caregivers. It might give you ideas for ways you can support your caregiver friend.
This post is a part of our #iCareforCaregivers campaign. Want to learn more about #iCareforCaregivers and how you can join in? Check out the official webpage at pagerobbins.org/icareforcaregivers.
September 30, 2016
31 Ways to Care for Caregivers
To kick off our #iCareforCaregivers campaign, we’re sharing a list of 31 ways you can care for caregivers. Want to learn more about #iCareforCaregivers and how you can join in on the sharing and caring? Check out the official webpage at pagerobbins.org/icareforcaregivers.
There’s 31 days in October, so we encourage you to think of a caregiver you know and do one thing each day this month to show him or her you care. Make a caregiver’s day! Let’s reduce caregiver isolation and stress one good day at a time.
2. Give a hug
3. Say, “You’re a wonderful caregiver!”
4. Listen, don’t interrupt
5. Give them the benefit of the doubt
6. Mail a card just because
8. Send a funny or encouraging text
9. Take a bouquet of flowers
10. Drop off a small treat at the door with no “from” on it
11. Go visit
12. Invite them over for a meal or football game
13. Invite them over just because
14. Have a normal conversation
15. Remember and recognize birthdays/anniversaries that their loved one might forget
16. Have coffee, muffins, and conversation one morning
17. Take them their favorite Sonic or Starbucks drink
18. Shop for groceries or pick up groceries that have been ordered online
19. Take them out to eat
20. Make a meal or an extra casserole
21. Stay with their loved one for an hour or so while they run errands, go to an appointment, attend worship, etc.
22. Pay for or be an in-home caregiver for the day
23. Help them remember and keep doctor/dentist appointments
24. Roll the garbage can to the street and roll it back when it’s been emptied
25. Offer to do some “honey-do’s,” like changing lightbulbs and air filters
26. Do housework or hire housekeeping help
27. Mow the yard or hire a yard service
28. Wash clothes
29. Put gas in the car
30. Take the car to have it washed and/or serviced
31. Ask specifically what the caregiver needs, and do it
September 21, 2016
Accepting the Diagnosis
No one expects to be a caregiver to a loved one with dementia. No one plans for life to turn out this way, just as your loved one never planned on having dementia. Maybe you had plans to enjoy retirement, to travel, visit family, and spend time with grandchildren. Perhaps you are still working and raising your own children, yet you are in the throes of caring for a loved one with dementia.
NO ONE plans for life to be this way, so it can be hard to accept your new reality when it happens. Accepting a diagnosis of dementia is not a simple, overnight process. It takes time.
Before you can begin the process of accepting a diagnosis, it is very important to get a clear diagnosis. If you take your mom to an appointment and the doctor says, “She has cancer,” you do not say thank you and walk out the door. You ask questions. What type of cancer? Will it spread? What is the recommended treatment? What are the side effects? What is the prognosis? You need and want more information. The same should be true with the diagnosis of dementia. If possible, it is important to get a clear diagnosis and to ask questions. What type of dementia? What stage? Are there medications that can help? Don’t be afraid to ask questions. Your loved one’s doctor can be an invaluable resource.
Accepting a diagnosis of dementia is ongoing. Once you have become accustomed to the new normal and how to deal with certain challenges, it suddenly changes. For example, in the past few months, your biggest challenge may have been your mom constantly wanting your attention, but now the challenge is that your mom is often uncooperative. You then have to accept the new normal, which could change again soon.
Individuals with dementia can no longer function as they once did, so you, as the caregiver, must learn to accept your loved one’s declining abilities and make adjustments. The harsh reality is that your relationship will change, and it cannot continue as it once was. Understanding and acceptance means you can have realistic expectations. With dementia, it is the caregiver that must change to suit his or her loved one. When a caregiver does not accept the new normal, it can lead to continual disappointment and anger and to wasted energy and a negative cycle of words and emotions.
So how do you accept your new normal? We asked family caregivers at Page Robbins for their best tips on accepting the changes and challenges that come along with a dementia diagnosis. These people are in your shoes. They get it. So we hope you’ll read these words and be encouraged, and we also hope you’ll put their advice to practice.
- “Be patient.”
- “Try to remember that your loved one is probably not doing ‘it’ to aggravate you.”
- “Your loved one can’t help it. It is the disease.”
- “Try not to snap at your loved one when you are frustrated. It only makes things worse.”
- “There comes a point in time when you simply can’t use logic with your loved one anymore, so don’t try. It just leads to more frustration for both of you.”
- “Constantly correcting the person is not good. Dementia is a separate reality. You can’t re-orient them – just as well as you know it is Sunday, your loved one thinks it is Tuesday. Why argue?”
- “Give yourself permission to not be perfect. We all have bad days and mess up. We all make mistakes. Just because you are a caregiver does not mean that you should now be prefect.”
- “Have a good doctor and enlist his or her help, especially for major changes such as switching to disposable briefs, taking away the keys, etc.”
- “Well-meaning people will say things they feel are helpful , when in reality it’s things they really should have kept to themselves. That person is not walking in your shoes and most likely doesn’t know all there is to know about you and your loved one.”
- “Keep your sense of humor. For God’s sake… it is OK to laugh!”
- “Accept help when offered.”
- “Learn the tricks. Build your tool kit (i.e. distraction, preferred family member, fiblets, keeping things simple, avoid arguments).”
- “Take Care of yourself!”
- “Being a caregiver isn’t rocket science… It’s much more difficult than that.”
If you’re looking for opportunities to connect with other caregivers, be sure to check out our caregiver support group opportunities. And feel free to call us to ask questions or seek guidance (901-854-1200). Even if your loved one lives hundreds of miles away and will never use our services, we’re happy to help.
If you’re having trouble accepting the diagnosis, our Starting Point Class for those with a loved one who has been recently diagnosed with dementia and for those who suspect their loved one might have dementia is Saturday, October 1 from 9 to 10 am at the Center. Please call to reserve your spot.