July 6, 2020 (c) Judith Allen Shone
Caregivers will find meaningful caregiver tips here, for themselves as well as loved ones, for keeping in their tool because other caregivers took the time to share, 🤗 ! 💙 Thank you for sharing your encouragement!
CAREGIVERS, these tips are validation that you are not alone on your journey, that others have known your desperation and your joys, and now want to lend support.
The foundation of caregiver knowledge comes from caregivers sharing tips, coping mechanisms and strategies, which they have learned during their journey caring for another with memory loss.
I have found caregivers are willing to share and grateful for help…help caring for others as well as caring for their own health and well being.
We look forward to adding all the perspectives and ideas that have worked …whether for a parent or parents, a spouse or a friend.
Important and timely information may help lighten the darkness of Alzheimer’s world.
See also the page, Ways to Encourage Caregivers.
NEXT, IT CAN BE YOUR TURN!
What experiences could you, as a caregiver, share?? In what ways can you contribute to the caregiver toolbox?
- How did you feel? What surprised you? How did you find solutions?
- Where did you get help? How did you learn? What do you wish you had known?
- What is the most helpful advice you could share with someone else?
Let’s add it to our collective knowledge for other caregivers.
It is important to all caregivers to support Sharing Our Knowledge!. Thank you. Write your Caregiver Tip to share so others can learn from your caregiving life. Then, contact me!
If you notice comments already are in a category where you would like to offer a suggestion, send you suggestion anyway. You will notice there are many ideas for each category.
Main Tip Categories
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Activities /-/ Aggression /-/ Ambiguous Loss, Grief /-/ Agitation, Anxiety /-/ Behaviours /-/ Clothing /-/ Communication, Language /-/Community Resources /-/ Confusion /-/ Disorders /-/ Doctors /~/ Driving, Riding, Flying /-/ Eating, Drinking /-/ Education /-/ Emergencies /-/ Emotions /-/ Family /-/ Finances /-/ Grooming /-/ Hearing /-/ Home /-/ Hydration /-/ Incontinence /-/ Laughter /-/ Legal /-/ Medications /-/ Memory /-/ Meditation /-/ Mobility /-/ Organization /-/ Professional Care /-/ Safety /-/ Self-Care /-/ Sleeping /-/ Stress Relief /-/ Sundowning /-/ Support /-/ Tendency to Fall /-/ Travel /-/ Vision /-/ Wandering /-/ Other
Alphabetical by entry title within each category
Tip Topic Index Listing
CHOICES: Loved ones with memory loss still want to feel they have control of their lives. Often, giving them two choices—we can shower now or in an hour?— or —would you rather paint or look at this book?—allows them the feeling they are still independent and part of the decision making. If the choices offered seem too complicated for the loved one, stop and reword the offer so their frustration is eased. The caregiver will want to manage the complexity of the choices, knowing the declining abilities of their loved one to make decisions will be based on the degree of the dementia progression. ~Glenna S., caregiver for mother 🌴
COLOURING BOOKS: Many are happy colouring pictures with pencils and crayons. Some have filled many books over the years leaving a collection representing various styles done at different times along the Alzheimer’s spectrum. For most, the books embody the hours spent by a loved one enjoying a hobby. But what to do with them? It has been suggested that they can be used for notebook covers, or photograph backgrounds in a frame. They can be cut up and made into a collage by other or younger family members. Favourites can be framed, and gifted to family or doctors or PSWs who have been with the loved one. They can be scanned onto a disk and shown on rotating through a digital picture frame that the family can watch, or leave the picture frame for others in the long-term-care home to watch. Others have suggested using them to wrap presents. Keeping these treasures that our loved ones leave us becomes a problem and I hope these suggestions help with that. ~ from various caregivers in conversation 📔
ENTERTAINMENT: When Mom was losing most of her abilities to communicate but was still very ambulatory, we looked for as many things to do where the activity was the entertainment rather than conversation. For us in a small town, there were not many obvious choices. We went to the farm stores in the spring when the baby chicks were in stock, we drove around looking for the most beautiful trees that were blossoming or leafing out, we have spent countless hours at the duck pond and watching Canada Geese in the park. Mom is not tempted by television, the radio or any of the more common distractions so getting outdoors was key. ~Robby, caregiver 🌻
GAMES: Different games can keep a loved one socially engaged and interested in his surroundings. Suggestions may not apply to everyone – consider the cognitive ability level and compatibility with game difficulties.
Jenga, Checkers, UNO (with big cards), Go-Fish, Solitaire, Sorry, Candyland, Chutes and Ladders, Connect Four, Guess-the-Sound -YouTube has videos (you can pause the video while loved ones guess), Look through picture books and play I Spy.
You can add more here if you know a game. ~Facebook Canadian Alzheimer’s and Dementia Support Group ❣
GAMES – In addition to the game UNO, my husband still enjoys playing Neighbours, a game we learned during the social hour following our Minds In Motion® exercise classes at the Alzheimer Society Halton. Download available. See Neighbours Game instructions. ~ Carol, spouse-caregiver 🌼
STAYING BUSY FOLDING CLOTHES: My wife likes to do what I am doing. This is not always possible. I have found that if she needs my suggestion, I have a laundry basket of clothes that she can fold…or refold if there are no new clothes from the dryer. She likes to be near me and this keeps her mind working while she is doing something where the frustration level is low. ~ Michael D., caregiver for wife.🛴
STAYING BUSY SHREDDING: One day when I was grasping at straws as to how my loved one could help me out, I remembered that I had a lot of things that had to be shredded and that was the beginning. I got the shredder out and the things that needed to be shredded and he went to work. He loved doing it so much but we eventually ran out of things to be shredded. I then reached out to family and friends and they would drop off things they needed shredded. He is so happy when he is shredding. This may be something your loved one would also like to do. Who would have thought? ~ Carol, caregiver 🌼
VIDEOS: Lately I discovered that while my husband has a hard time wanting to ‘do’ activities with me, I found he was watching with me when I was watching wildlife at explore.org, bears, birds, elephants, and those with dogs. If I sat next to him and we watched it together he was interested for about 20-30 minutes…a long time for him. He has little recognition of words now and so this nature video seemed perfect for now.~Darlene D., care partner for husband 🍇
Ambiguous Loss, Grief:
ANXIETY ATTACKS: There are any number of behaviours that seem to qualify as ‘anxiety’ – just look on YouTube! But if your doctor has diagnosed anxiety, you can try this. If I can catch it soon enough, is to get more oxygen into My Love’s blood stream, I ask him to deep breathe. He has a COPD breathing device called an Aerobika, we have adapted for concentrated breathing. It gives the same results as deep breathing— in through the nose, 2,3,4,5 out through the mouth 2,3,4,5— and will help to calm him many times to eliminate the need for medication. The breathing seems to be a distraction similar to the ‘5-4-3-2-1 Technique’ of concentrating on objects long enough for the anxiety to pass. Each event has been different, so we try different coping mechanisms. ~Jas. caregiver 🌷
STUFFED ANIMALS: Nervous agitation can sometimes be calmed by the presence of a pet, real or not. A stuffed animal can take the place of a real animal when one is not available or permitted, or for any reason, not appropriate. In some cases, the same calming benefits that a real animal provide can be felt with a soft, lovable, furry, stuffed animal that has the appearance of being real. Some even offer movement in response to being touched.
The needs to nurture, to be interactive, to love and feel loved in return, and even to feel one has ‘a job’ to care for another, often are satisfied by a stuffed animal. There are fewer safety issues related to a stuffed animal, so quality and purpose of the manufacturer are important, whether animated or the traditional teddy type. My Love knows his animals are not real but he has named them and, at times, treats them as if they are real. He seems not to feel alone and seeks them out when he wants a cuddle. ~Jas, caregiver 🌷
BATHING: Please read tips from caregivers as well, but since there are so many possible issues surrounding bathing and showering, I thought perhaps offering the link to Teepa Snow’s videos on this topic might be of help to those who have access to watch her and learn on with Teepa Snow on YouTube.
REMINDERS: One of the first things to go with Alzheimer’s is the “cognitive” switch that reminds someone of the last time they showered, ate, drank, slept. When my father began to argue over changing his clothes, or showering, I realized he really didn’t know when the last time was because the passing of time meant nothing to him. To help him. I have added 24-hour clocks, BIG calendars that WE can write on. This year, we got stickers! Bath time, change clothes, hearing aid batteries, clip nails, etc. But as with most things, I took away his decision and just ran the bath. I bring the subject up at breakfast, mention it on the hour “bath at 1900 hours”, and after dinner, run the bath and tell him it’s ready. I go into his room at night, or very early morning, to take out his dirty clothes and lay out clean ones….I often find him standing in front of the main calendar looking for his next bath. ~ Kathy K.M., Caregiver for father 👨👧
SIGNIFICANT CHANGES: I learned from my counsellor that new behaviours that are significantly different from ‘normal’ should be considered as red flags telling me we need to visit the doctor to find out what is happening. Big changes, especially if they are ongoing, can be signals something new is happening in the body. Go immediately to see the doctor for discussion and testing! ~ Jas, spouse-caregiver🌷
COMPRESSION SOCKS: I wear compression socks and know PSWs who help our loved ones put them on. Regardless of the brand, There are generally instructions for on and then off included with each pair.
In addition, several things that I learned from the technician at the Vascular clinic:
…use donning gloves to put them on first thing in the morning, best time to put them on is either just before getting out of bed, or right after getting up, or soon after a shower taken early .
… swelling usually goes down at night and then increases in the day.
…put moisturizing cream on legs and feet when you remove socks in the evening rather than morning as creams tend to break down ’compression’ element.
…to prolong sock life, hand wash and hang to dry without wringing the socks.
PSWs shared it was best, while using the donning gloves, to smooth out the compression evenly, and so fingers and nails don’t puncture the fabric; to get the heel on first and then, carefully and step by step, raise the sock top, smooth down, then up, ‘settle the compression’ and done. ~Jas, caregiver 🌷
NAME LABELS: With the possibility of long-term care looming, I have been sewing name labels into my loved one’s clothes that fit. Some are now too large and would not follow him to another residence. This saves me time later, as I know time is approaching. ~Jas, caregiver 🌷
PULL-UP PANTS: My LO wore jeans most often and then I realized it took longer to unbuckle, undo the button, and unzip than to just pull down a pair of pull-up pants. But the one thing that annoyed my LO was he kept trying to tie them tight enough to hold his pants up. So I removed the ties, cut them down and made belt loops on the waist band for a belt. He now wears the pull-ups every day and I rest a wee bit easier that he might get to the bathroom in time to ‘hit the mark.’ ~ jas 🌷
SEASON CHANGES: I noticed My loved one with Alzheimer’s needed help during temperature changes this fall. He began not to be able to associate the feeling of hot or cold with his own body. I realized I needed to make suggestions for adding a sweater, using a blanket, even wearing the full set of pj’s, not just a top. The temperature when we get dressed may not be the same throughout the day or when we go to bed, and so a ‘check-in’ once in a while will keep a loved one comfortable, regardless of the season. Don’t forget to confirm, before they need them, that coats still fit. Locate boots, hats and gloves, or shoes for any season. ~ Emily. E. therapist and co-caregiver 🌾
WARM or COLD? I learned My Love cannot tell me if he is cold or hot. He no longer relates to those words. If I ask, he does not connect his cold body with the word ‘cold.’ So I must be sure to have a sweater nearby and actually put it on him since he no longer realizes he is cold and that a sweater makes him warm. A touch of the skin will tell you what they cannot. (read Feeling Warm or Cold?)~ Jas, caregiver 🍓
PHONE CALLS: It can be lonely caring for someone 24/7. I made a list of caregivers I know. I call them each a couple times a month. I can’t have a schedule, but it helps me talk to others when I cannot get out to see them and we still can learn from each other. It has become a very beneficial routine. I have found out someone needed food and could not get out. I have discovered someone going through the same behaviors we were. I found someone who gave me suggestions when I was at my wits end. Call someone and you will have new friends. ~ Jeananne A. caregiver, Manitoba 📞
PROCESSING LANGUAGE: When my husband was in middle stages of Alzheimer’s, I noticed he began to misunderstand words or would ‘miss’ them altogether. Then I realized he had trouble following instructions. I repeated myself often and even then I had to add visual instructions as well.
For instructions, I spoke one step at a time and did not go on until each step was completed. I learned to use fewer words—simpler words helped him grasp the meaning. I tried not to yell the words (he could hear), to speak slowly, confirming he understood the meaning.
I have acted out words, (like charades) to add visual cues to the audio sounds. If he missed ‘catching’ or understanding words because of a noisy situation, I tried to removed the commotion. If his confusion came from loud TV or radio, I reduced volume, or turned to a station with calm music, so he could hear and understand what he still could. Sometimes he enjoyed watching the TV but not listening to it and I now believe it was because the actors spoke to fast. ~ Jas, spouse-caregiver 🌷
WORDS: Simplify. Too many words confuse. Ask specific questions that require a “yes” or “no” answer, and if you must repeat, only change one or two words for clarity. Sometimes it takes time for them to process our words—give them time. Offering one choice in a question usually is simpler for them to grasp. ~R.B., caregiver for wife
RESOURCES: Finding the specific resource, local or otherwise, or information you are looking for sometimes means you have to know what you are looking for. If you are not sure, ask the LO’s doctor or perhaps discuss with the local librarian or Alzheimer organization personnel who may know both local and online resources to help with the topic of your search. ~ J. Whitmore Librarian, retired. 📙
BREATHING AID: In addition to Alzheimer’s disease, My Love has anxiety. He now has two attacks daily, increasing slowly over four years, as part of his sundowning period. I found if, when he has his attacks, I can distract him, or increase his oxygen intake, sometimes we can avoid taking his little green pill. We have an Aerobika, a Canadian vibrational breathing device used for his COPD. I found if he would breathe with that device, not for the vibration, but for the deep breathing to get more oxygen, sometimes it helped get us beyond the attack. Deep breathing without the device would probably work: in though the nose, out through the mouth. ~Jas, spouse-caregiver🌷
DOCTOR APPONTMENTS: Understand the importance of communicating with doctors. Ask the loved one’s doctor to confirm that you, the partner, spouse, or caregiver. can attend meetings/appointments with the doctor when the LO has an appointment. A LO who forgets, doesn’t like to admit memory loss, or shows signs of denial, can lead the medical staff to error in their diagnosis.
A doctor who, while honoring the LO as his patient, also listens and includes the the partner in the conversation, is more apt to arrive at an accurate diagnosis. Caregivers see and hear things, and take notes when LOs do not remember. Caregivers can confirm answers to questions that LOs cannot answer or might answer incorrectly. ~ condensed from AARP Caregiver’s Guide🎑
DOCTOR APPOINTMENTS: Preparation before the appointment: ask your loved one if there are questions they want to ask. Bring the list of questions that the LO had as well as those the caregiver is asking. Bring to the appointment the most current list of medications, prescribed and OTC, with dose and schedule listed.
During the appointment: Let the patient, your LO, answer as often as possible and let LO say what is on his mind in conversation with their doctor. Caregivers can fill in after the LO has answered if asked to do so. Include the LO in the discussions without talking ‘around’ them. Takes notes on all answers for future reference for your LO and caregiver. Respect the privacy of the LO and leave the room if necessary. ~ caregiver discussion group 🧓
Driving, Riding, Flying:
BUCKLE UP: At some point, I noticed My Love had a hard time buckling his seat belt. I learned if I helped him before we ‘left the dock’ I wouldn’t have to pull over to help him after we were ‘underway.’ Small thing saved my frustration later. ~Jas caregiver 🌷
CONFUSION ABOUT FOOD vs NON-FOOD: As dementia progresses, a person may put things that aren’t food into their mouth, eg napkins or soap. There could be a number of reasons for this, including:
The person no longer recognizes the item for what it is or understands what it is for. They may reveal their confusion when they ask what it is for.
Remove from view the items that the person may confuse for food.
The person may be hungry. Offer food as an alternative to the item they are confusing as food.
Make sure healthy snacks like bananas, carrots, grapes, orange segments are available, easy for the person to see (both within eyesight and in clear contrast with the plate or immediate environment) and easy to access throughout the day so they can eat when they want to. ~Alzheimer Society, UK 🌅
GRASPING: To prevent drinking vessel (plastic or glass, or a paper cup) from slipping out of our loved one’s hand, use rubber bands saved from fresh vegetables to slip around the outside of the glass to make it a ‘not-slip’ side. ~ AARP suggestion🥛
SHATTER RESISTENT: I found that plastic vessels were better than glass or china. Cups, glasses, dishes, were not breakable and thus safer. Plastic is less likely to slip from a wet or unsteady hand. But if it falls, is less likely to shatter. ~ C.C., spouse caregiver⚾
SPILLING: I noticed lately that my loved one is spilling his food, on his shirt, and pants, and on the couch when he eats there. There is a pad that covers his seat to protect the couch, but his clothes get dirty. I made an adult bib, a bit like an apron top, striped like a male shirt, for him to wear. Then I don’t have to change and wash his clothes every day. ~Jas, caregiver 🌷
MEALS: As time has gone on and I have gotten older, and the Alzheimer’s has advanced to where it seems my every move has two of us in one shoe…my every thought and action revolves around my loved one…I have reduced our meals from 3 to 2. Brunch and supper. We don’t need big meals, just nourishing food. Drinking liquid meals has not been a satisfying option. Since I am the only one who is aware of mealtime, or even what we have to eat, it made sense to reduce my preparation/thinking time for less stress. It seems ok. ~jas, caregiver 🌷
EDUCATION: When we, as caregivers, are talking to someone about caregiving, we are educating them. It is through our discussions that we help other caregivers learn. Plus the educators and even the medical profession still learn about the role and all it entails. Hopefully, those in the medical profession and education field will listen and observe. We know, there is no one way to be a caregiver, so the doctors, the educators and other caregivers learn from caregivers. ~J.B.Anderson, caregiver
EMERGENCY GRAB ‘n’ GO: In an emergency we don’t have time to stop and think what we will need to take with us when we have to evacuate our home or apartment. At the bottom of the blog post “What if” Emergency (July 22, 2020) there is a list of items to consider for a Grab ‘n’ Go bag to have ready in case of emergency. What you put in it depends on the needs of your loved one and you. Consider the variety of possible items and purchase your bag accordingly. You will have to carry it or roll it. Consider weight. I keep ours near our door so if the situation arises when we have to leave I can focus on my loved one, knowing what is needed is in the bag I will take when we leave….to go hospital by car or ambulance, to go outside in case of fire, to follow the firemen wherever they lead us. I made a note in my phone calendar to update it every three months…you may need more often. ~Jas – spouse-caregiver🌷
FIRE ALARM: In later stage of Alzheimer’s disease the word “fire” might mean nothing. The fire alarm itself is just a very loud, annoying noise. The urgency caregivers feel in an emergency might generate anxiety, agitation or even aggression in a loved one. Caregivers need to remember to remain as calm as possible with a focus on moving the loved one and yourself to a safe situation. You might have a plan in place with a neighbour or building manager, depending on where you live. It is a big responsibility, which can come with considerable effort, to get yourself and your loved one to a safe place in an emergency. If you have a plan ahead of time, your anxiety will not be transferred to your loved one and moving forward will be faced with less resistance. How to evacuate? Where to go? How to get there? An emergency plan created ahead of time will relieve stressful moments. ~Jas-caregiver🌷
PERSONAL INFORMATION: Beside the front door we have a list posted that has the name, phone numbers, addresses of family members, as well as doctor phone numbers and MedicAlert ID numbers for each of us in the house. This is for paramedics or others who might need the information if one of us is unable to give that information.
In addition, we keep the complete medical history of each person in a medicine vial in the freezer. “The Vial of Life program stores vital health information including physician and pharmacist contacts, allergies and other medical information in a vial in the refrigerator. A fridge magnet alerts emergency services that the client is part of the Vial of Life program.” We also have a bright orange sticker on our front door. Pick up a vial from a pharmacy. ~ L. Conklin, family caregiver 🌿
FEELINGS: We know caregivers must take care of themselves in health, nutrition, exercise, and social aspects because they need these areas fully charged. Without them, caregivers have a difficult time caring for any other—like ‘pouring from an empty glass.’
For the same reason, caregivers should reach for happiness, a sense of well-being, with a goal to be genuinely “happy, because they cannot give something that they do not feel.” ~ Well-being from Abraham-Hicks ⭐
INTRODUCING A LOVED ONE: Families can help those who come to visit their loved one by having conversation prompts available. Visitors, medical staff, and service workers, especially those there for the first time, can talk about topics the loved one recognizes if they know what might be of interest. Have books of favourite topics, photographs of family or activity participation visible nearby. Or, gather photos of books and activities that reflect those interests and put them in a framed collage. Photos are good reference for the loved one and for visitors to see together. For the wall, create a fairly large word cloud, (see wordart.com) frame it and hang it where all can see it. The words you choose to put on it will encourage visitor communication and enhance the visit. ~ from a session at an Alzheimer organization 🌸
FAMILY CAREGIVER: Because caregiving is a long-term role, learn as much as you can about the disease as well as the caregiver obstacles. Seek out other caregivers—do not carry on alone. Know your limits…your time limitations may require that others get involved.
Accept your feelings: acknowledge and accept your feelings, primarily anxiety, anger, guilt and grief – good and bad.
Find caregiver support – friends, family, church, support groups, online groups, therapists and counsellors.
Connect with the loved one – focus on them specifically for a period every day to understand and lower the stress levels.
Caregivers must tend to their own needs- socially, spiritually, journal, find respite, exercise, eat and sleep right, visit doctor regularly.
Seek out and find community services to help relieve burdens – transport, daycare, personal care, health care, meals and community service groups.
Ask others to give long distance care – call to check in, call to waken the LO, help make arrangements for appointments, activities that can relieve caregiver from total responsibilities. ~ Family caregiving article🦺
BATHING REMINDERS: One of the first things to go with Alzheimer’s is the “cognitive” switch that reminds someone of the last time they showered, ate, drank, slept. When my father began to argue over changing his clothes, or showering, I realized he really didn’t know when the last time was because the passing of time meant nothing to him. To help him. I have added 24-hour clocks, BIG calendars that WE can write on. This year, we got stickers! Bath time, change clothes, hearing aid batteries, clip nails, etc. But as with most things, I took away his decision and just ran the bath. I bring the subject up at breakfast, mention it on the hour “bath at 1900 hours”, and after dinner, run the bath and tell him it’s ready. I go into his room at night, or very early morning, to take out his dirty clothes and lay out clean ones….I often find him standing in front of the main calendar looking for his next bath. ~ Kathy K.M., Caregiver for father 👨👧
FEELING GOOD: Caregivers know they have to feel good to do a good job. They know ‘how good it feels to feel good.‘ 🥰 Likewise, a loved one likes to feel good. In addition to the daily grooming listed below, include fresh, washable clothing: bright coloured smocks, clean socks and underwear daily. Grooming refreshers can make all the difference in the lives of loved ones. Caregivers see Self-care.
FINGERNAILS – MEN: I noticed my loved one’s fingernails were longer than normal. I asked if he needed clippers and he told me he couldn’t clip them any more. I had to learn to do it! I read online that clipping them wet was not good, that dry was better so they did not tear or bend. I found his nails so thick that I had to file them a bit at first since I was afraid they’d crack if I clipped them.I started clipping them little at a time from one side to the other. When I was finished I again filed them a little to be sure they were not jagged. Then I put a little nail oil on them so they’d not be too dry. If you visit a manicurist, ask for their suggestions. ~Jas – caregiver 🌷
SHAVING MEN: I had to learn to shave a man’s face. I do it every other day now, but I never had done it before. Luckily, My Love was able to tell me how to do it. I found I could use an electric razor best, but he still used his blade when I was finished…until he could no longer do it. I am glad he was able to teach me before he no longer could. ~ Jas, spouse-caregiver🌷
SHOWERING: My loved one used to take a shower every day, and then the days between increased. Now I have to suggest a shower and even help him washing with soap and cloth and rinsing. We have a shower chair but he refuses to use it and prefers to stand. I wash and rinse his hair with the shower head because he never got his hair all wet. I put the towel near his exit point, where there are grab bars to hold on to so he does not use the towel bars. He prefers still to dry himself off.
The beautician suggested using clarifying shampoo to help with the oily areas that accumulate. A PSW mentioned the 3 in 1 body wash/shampoo/conditioner. I have tried both. We mostly use a bar of soap and washcloth and shampoo separately. He cannot use the body wash because it is in a bottle, which means another step in the process, which now is too much. He still can rub the bar of soap over his body and legs.
At first he was shy about my being there. We worked it out. Nearly two years ago we tried having someone come in to help with his shower. He ‘would have none of it’ and so I had to learn to help him. He does not like water in his eyes, so I am careful about that. And now that he has a very hard time with words, it is a good thing we have a routine established. ~ Jas, caregiver 🌷
HEAD SET vs EAR BUDS: Instead of using the more popular ear buds, use head sets for those who want to listen to music. Hearing aids and anxiety about something in their ears might be overcome by head set over the ears, plus the sound is healthier. ~Burt A., carer, Peterborough 🍀
HEARING AIDS: I noticed when my LO started becoming confused, he began to fiddle with his hearing aids, to take them apart or put them in his pockets. I have found them under the bed and have washed them , unknowingly, with the bed linens. One time he pushed the battery inside his ear and had to go to ER for it to be removed. I have had to be super aware so that he does not lose them, break them or injure himself and then not be able to hear. Plus I was told they help him prevent falls. I do not want to have to buy another pair.~ Janet, care partner 🕯
NOISES: My wife recently had to get hearing aids. I find she becomes anxious, annoyed and withdrawn, or turns them off, if she is in a group of noisy or loud people. She is better and her anxiety goes down when I move her away from sounds that bother her. ~Burt A., carer, Peterborough 🍀
DEMENTIA FRIENDLY HOME: Links to non-commercial Canadian and US resources for home safety tips can be found on one page on this site.
HYDRATION: On hot days, it may be difficult to keep your loved one hydrated. Tip – have a drink with them. Keep the glass/container small. They will finish the drink if container is not large. Keep the liquid coloured. Not water which they might not see. Maybe juice or milk or chocolate milk. Offer popsicles, jello, soups (even cold soup), ice cream. Hope this helps. ~ Eileen, caregiver 🌹
BE READY: Changes in bodily functions can come quickly. With Alzheimer’s, it is almost a certainty that incontinence, a loss of bladder or bowel control, is going to happen – it is just a matter of time. To eliminate panic, have supplies ready. Caregivers have suggested waterproof bed pads (large ones), waterproof mattress covers, extra underwear, incontinence products – pads and underwear- gender specific. It was also suggested to have a separate set of clothing handy for accidents away from home.
(see Grab’n’Go bag -opens on a separate page-you can come back here!)
Keeping supplies at hand, at home and a set in the car, will reduce the panic, anxiety and humiliation when the time comes. We both started using bed pads before there was a need, just to get familiar with the idea, saying, “neither of us know when we might need these!” I hoped not to single him out.
To establish as my habits, I do not offer liquids to him after dinner and I insist that each night before bedtime he go to the bathroom, even if he tells me he “can’t.” When incidents occur, I just say, “accidents happen,” without embarrassing him. Even if it is just the two of us, I still respect his sense of privacy, even while I help him make changes. ~ Dorothy M., spouse-caregiver, Alberta 🍓
PEEING IN HIS SLEEP: Wandering in the night is of a concern, and if he is sleeping, he is sleep walking. Sometimes he unknowingly peessomewhere other than the bathroom…on the carpet…one of the times I must hold my temper. I try to be awake when he roams, with the intention of getting him back into bed, but he has gone to the batghroom on the carept before I was aware he was even up. For this I have doggie training pads to stand on and soak up the urine from the carpet. Then I have Resolve Urine Destroyer for Removing Pet and Human Urine Odor to spray on the area. It is difficult to predict where this will happen. I have put training pads on the floor around his side of the bed, with absorbent side up.
WASHING AWAY THE UNRINE ODOR: When our LO began to lose control and wet his clothes and the bedding more frequently, we noted our washing loads increased in number, in frequency. And we noted it took more than just washing in laundry soap to remove the odor of urine. We tried vinegar and found apple cider vinegar worked better than white vinegar added to the wash cycle. Then we tried Borax used with 50/50 Washing Soda and found it worked even better. I still ask caregivers what they do.
Hard water and soft water seemed to impact the results, but we found we needed to add to the regular detergent to eliminate the odor. ~ Andrea S., care partner 🍋
LAUGHTER HELPS: I find when my loved one laughs, I get to laugh, too. Even a made-up joke that is not terribly funny to most others might be something to laugh about, just to laugh together. Laughter can communicate where words cannot. It has been said “it is the best medicine” so use whatever it takes to create a laughable situation or moments of reduced stress. ~Caren P.,caregiver, UK ☘
GET LEGAL ADVICE: As soon as possible following diagnosis, the loved one with Alzheimer’s would do well to seek legal advice while she or he can participate in the decision making or can no longer speak for her/himself…legal, health, financial. Be ready to discuss wills, trusts, prior tax returns, life insurance policies, pension information, deeds and mortgages, bank accounts, investments, property ownership. As early as possible, consider Power of Attorney (POA for health), or a living will, for the caregiver as well as the loved one.
- In Canada, for certain types of legal advice, contact your provincial Legal Aid service or your provincial Alzheimer Society for more information.
- In Canada, provincial and local bar associations can provide names of attorneys practicing in your area who deal with these type issues.
- In other countries, seek information from your Alzheimer’s organization that is appropriate for your area. ~Jas. caregiver🌷
BLISTER PAKS: We know many pharmacies who prepare our loved one’s medications in blister packs to make pill giving accurate and accountable. But as caregivers age, it could be that blister packs for their medications would also be helpful, and save time. Talk to the pharmacist for suggestions. ~Jas, caregiver🌷
MEDICINE: At first, when new behaviours appeared, I would ask my wife’s friends what to do. Many of her friends suggested medications. I decided to ask her doctor which one was best. He explained to us why the particular medication was selected. Friends meant well, but were not doctors. I let her doctor suggest and prescribe the treatment for new behaviours ~ Steve, caregiver ☘
PICKING UP PILLS: I have watched loved ones with big fingers try to take little pills from a dish, from a bottle or from a dispenser where the pills are placed into their hand. To be sure I can see the pills, I put the pills on a tissue on a table, where those in my care who were able to be ‘in charge of their pills’ could pick up pills one at a time, while I could still observe. The tissue prevents the pills from ‘sliding away,’ unaccounted for. Equally convenient is a small paper plate. If I need to move it, I just pick it up without losing any pills in the movement. Some loved ones can easily ‘drink’ pills from a small medicine cup. Each person is different. Most times, these routines have been accepted without resistance. ~ L.H. Caregiving technician 🦅
SPOON FOR PILLS: My Love has been having issues with pills. I think I have seen him take them, yet I find them in his food and drinks. He does not know what has happened. I was watching, but to be physically involved, I have now been putting pills on a spoon two or three at a time and putting them in his mouth myself, and making sure he drinks his water to swallow them. I have spoken to the pharmacist about which ones I can crush and which ones I cannot. Eventually, I will have to crush the pills that I can. ~Jas, spouse-caregiver 🌷
TAKING MEDICINE: I found that if I put my l wife’s pills in a small plastic dry medicine cup, she could ‘drink them’ into her mouth rather than pick them up from my hand, or from a dish. Sometimes she used to drop them rather than get them to her mouth. I generally put two or three pills at a time into the cup so she does not choke on them. Then I give her water to swallow with the pills. Some friends have told me they use a small juice glass for the pills. ~ V. Thomas, caregiver for wife 🍃
MINDSET: Caregivers have to let go of the person their loved one once was in order to care for the person who they have become. Enjoy who they are now, and the memories that surface, accurate or not. ~ Bobbi Carducci, former caregiver for father, certified consultant, author 📙
LEAVE HOME LIST: The other day we had been gone from the house a few minutes when my hubby, who has Alzheimer’s, realized he had forgotten his teeth. That prompted me to place a list beside the door indicating things to review before we left home. Teeth went on top! Water bottle, keys, wallet, glasses, hearing aids, medications, incontinence aids, tissues, phone, notebook/pen. Check shoes are not slippers, that stove, water, lights, TV, radio, are turned off and other exit doors are closed and locked. Windows closed, drapes pulled. I now rewrite the list occasionally so it looks different and I won’t ignore it. ~R.E., caretaker 🌺
DOCTORS: At first my wife’s GP ordered the testing for Alzheimer’s. She sent my wife to various other specialists to confirm findings. When my wife was confirmed, her GP referred her to a Geriatric specialist who was knowledgeable in senior behaviours and diseases as well as the dementia diseases. He remained my wife’s secondary doctor, and the two doctors kept each other informed from then on. ~ Steve, caregiver ☘
OCCUPATIONAL THERAPY RECOMMENDATIONS: At a certain point we were advised to have an OT come into our home and make an evaluation for changes that would make it a safer place for seniors, and especially for one with Alzheimer’s, to live easier, day-to-day. There are many suggestions that can be made and each home is different. In our home, we were asked to get heavy grab bars installed in the shower, to keep the tub mat in the tub and to have a shower chair and to get an elevated toilet seat with handles. We were asked to put a grab handle on the tub as well. All throw rugs had to go because of slip risk. A railing on the edge of the bed was added to prevent falling out of bed and for grabbing when moving in the bed. We put the bells on the outer door as an alert that someone was opening it, with the mention that there might need to be an additional lock at some point. Not all things suggested apply to everyone. It is good for each home to have an assessment every so often because situations and requirements change. ~Doctor recommendation and Occupational Therapist conclusions. 🍄
CAREGIVERS TAKING CARE OF THEMSELVES: . . . means they will be healthier and, therefore, can provide better care to their loved one.
Never assume another caregiver is going through what you are experiencing, or that you experience what they do. We have no idea what others are experiencing in their personal lives. Their life will be different.
Sometimes you get so busy taking care of others that you forget that you are important, too! Take care of yourself, of your needs, of your loved one and of your life in a way that words for you.
- Take a break, have your luxuries, spend time with friends, arrange to go shopping, make time for your own passions, all without feeling inadequate or guilty. It is necessary that caregivers feel refreshed to remain a healthy, rested provider for their loved one.
- Eat well, focus on nutritional content. Exercise, sleep well, and see a personal health provider regularly. If these areas are threatened by caregiving, or caregiving is threatened by failures in any of these areas, respond as if there is a red flag— get help immediately.
- List the tasks that are done on a daily basis to be able to recognize and acknowledge the important issues. Rank them. This way the most important ones get attention. Ask for help with those things that push caregiving beyond the boundaries for each day and task.
- Schedule relief time, when someone will spend time with the loved one while the caregiver takes a break, either out of the home or in the home.
- Have someone lined up, or a service that provides carers handy who understands your loved one so when your stress, exhaustion or illness arise, someone can come in for a longer period than a few hours. Physicians, family members, PSWs, Alzheimer Society counselling services , overnight services all can contribute ideas to solve the particular issue you have.
- Emotions are our ‘guidance system.‘The whole spectrum of emotions will appear at some point throughout the journey. Let emotions be a guide to the intensity of stress that may be keeping you from being your best or doing your best. Pay attention to how you feel and respond in the best way possible at the time.
- Read Caregiver Care here on this site and find other appropriate articles online related to your needs. BUT DO IT. Having ideas researched and solutions ready will begin to reduce stress before it begins. ~Various people contributed these comments through discussions over time. 🌞
- Read Maybe I Could Have… by Andrea René Williams, clear reflections on ideas she wished she’d done better, on ways she wished she’d been better prepared.
MINDSET: During a writing session in an online class, this phrase of wisdom appeared at the bottom of the page where I was writing.
What we choose to empower first thing when we wake up sets the pace for our entire day to follow. – Hope Koppelman
As I reflected over my years of caregiving, it struck a note. It sounded much like “From the get-go, start as you intend to go on” that I had heard in my pre-retirement days. On those days when I started out with intention, I followed through that day, focused, without having to keep reminding myself of my tasks. Even since then, I’ve always felt better on the days I start the day connected to what I love, recognizing where it fits into the day’s agenda. ~ Jas, caregiver 🌷
SERENITY PRAYER: The challenge we face as caregivers is well expressed in the following Serenity Prayer. This is self-care :
“God grant me the serenity to accept the things I cannot change,
Courage to change the things I can, and (the) wisdom to know the difference.” ~ Words modified from the original, attributed to American theologian, Reinhold Niebuhr 🌞
BODY TEMPERATURE: Some people ‘sleep hot,’ but there may be a need for additional blankets on the bed during the night. Sometimes a loved one does not realize they are cold from lack of clothing or blankets. If you are cold and think they might be, too, add a light blanket.
The same for clothing during the day or night. Check that if they might be chilly and need a sweater or heavier clothing, or are too hot and need to remove a layer or wear lighter clothing. ~ Jas, caregiver 🌷
SLEEP PATTERN CHANGE: I hate doing dishes at 10:30 at night when I would prefer to be going to bed. But lately My Love, in later stages of Alzheimer’s, is changing his sleeping patterns. Much like a baby, he is getting his wake-up and go-to-bed times mixed up and his sleep time is shifting forward by 2-3 hours. I keep attempting to wake him every 15-20 minutes. My day now is longer as a result. This cannot last for long or I will become overly tired myself.
I came up with a solution I hope works. I prepare my breakfast at 8. Prepare his breakfast at 11:00, just after he wakes up. Or we might have a late lunch that becomes our breakfast or dinner depending how the morning went. At 2:30, we have something taken from freezer, not made in morning! We will eat again at 5:30-6:00. Pans and dishes washed up in afternoon. I have no dishwasher. Crock pots of soups made on the weekends have become mainstay and will sustain us through this period while we have big meal midday. This meal shift seems to work without encroaching on his pre-bedtime period, nor mine. ~ Jas, spouse-caregiver🌷
HALLUCINATIONS: For a three or four years, my LO has had hallucinations as part of his daily sundowning experience. Many times, he has pointed to areas of the room asking me where this or that man or woman had gone. I generally have responded that “I did not notice since I was in the kitchen.” It seemed to satisfy, even though he often still seemed confused.
Last night I happened to be right beside him and I noted he seemed to be pointing to a photo with three people seated on the ground. I asked if those were the people he meant. He said “yes.” Then he began to tell they had said something to him. Although, these might not be the only triggers in the room, I realized I should take that picture, and others with faces of people in them, down so he won’t feel threatened or confused by the subjects. ~Jas-caregiver🌷
EARLY CONTACT: I must put this…so many have told me…one of the first things to do once you confirm the diagnosis is Alzheimer’s… contact the Alzheimer Society, or organization in your area, to establish a relationship, an association. Having the connection will make life easier because of all the ways they help caregivers. ~Jas-caregiver 🌷
SUPPORT GROUP MEETING PLACE: There are many places a support group can meet. But COVID-19 has solved the problem of not being able to get together by generating ZOOM support group gatherings. This is also helpful for caregivers who cannot leave their loved one alone, but could benefit from the support such a group provides. Support groups generally have an atmosphere where one can express feelings in a supportive environment and discuss the issues you are encountering. Connections between caregivers are still made through this conferencing method. Ask you Alzheimer Society office or other caregivers if they know of Zoom Support Groups you can join. ~ Jas, caregiver-author 🌷
SUPPORT SOURCES: When you need help, readiness becomes important. It is unlikely that one group will be able to supply all the vital assistance. Focus on group specialties so you will be ready when you need help. ~Peter.T., caregiver for wife and father of a caregiver 🍂
SUPPORTIVE FRIENDSHIP: A friend of mine told me about a mutual friend who is a caregiver for his wife. She suggested I call him just to let him know he could talk to me anytime. His response certainly surprised me. He asked me to lunch! (before this virus thing!) and we sat and talked about his wife for over two hours. I had no idea what he was going through. He didn’t realize I had been through this a few years earlier. I wanted to suggest to people to talk to friends. Be a friend someone can turn to. You may only have to listen but that connection and friendship means a lot. ~Barbara, former caregiver, northern Ontario 🍁
Tendency to Fall:
PREPARATION: Do not wait to fall to realize that aging seniors become more prone to falling. Falls can happen for all sorts of reasons from medication side effects and physical abilities, to lack of balance, eye health and environment. Find a Falls Prevention class to prepare you to, at least, be aware so you can reduce the chance of falling. Ask your health provider or look online to locate a class near you. Lifemark Wellness, for example, has free classes online in Canada during COVID-19. ~Jas, spouse caregiver 🌷
NIGHT VISION: For those who get up in the night, it might help to put glow tape on furniture edges so the loved ones do not bump into corners of dressers, bed frames, tables, corners of walls, etc. Glow tape comes in rolls and can outline doors, indication directions with arrows, outline furniture edges, indicate where the person should be looking, guiding them to or from their destination, typically the bathroom. In the bathroom, the switch can be outlined and door handle identified by glow tape. (also mentioned under ‘wandering‘) It acts as a reference point so loved ones sense ‘place’ in the dark. It does not work at all in light and not well if lights are on. A night light glow may not interfere if at a distance. You will need to test. ~ Jas, spouse-caregiver 🌷
NIGHTTIME DISORIENTATION for TOILETING: In the darkness of night when I am sleeping, my loved one unsuccessfully tries to navigate to the washroom, in a sleepy or disoriented state. To try and correct this it has been suggested that I use nightlights that show the path and perhaps strip lighting or night glow tape around the door, making it a focal point. Additionally, it was suggested a bed alarm on the mattress would alert me when he gets up. To keep him from going in ‘the wrong direction’ I can put safe, soft barriers, to redirect him. If the situation becomes more serious I can consider a portable toilet beside the bed. It suggested, because there are no tried and true methods for every person, that we invite an OT Therapist and LHIN (Ontario) coordinator to evaluate and make other suggestions. ~Alzheimer Society counselling 🌸
WAYFINDING: I noticed that each time my loved one needed to use the toilet, he was asking permission and then asking me where it was. I found putting a dark blue tape strip on our white walls created a contrasting visual cue for him to follow from the living room to the entry door. I taped a large blue arrow on the door so he would know that was the room. He still asked if that was right.
Since he gets up at night, I put glow tape on wall and furniture to indicate the path from his bedside to the bathroom in the same way. It acts as a nightlight, prevents bumping into unseen objects and it helps get him to the right room, but because sometimes he still wanders, I often just wake up and take him.. ~ JBA, caregiver 📘
WRITE IT DOWN: Find one small notebook where you can keep dated notes about the one you are caring for – you can record behaviours, changes, questions, or suggestions for doctors you may see, where your information will be in one place.
- smart phone is good for notes
- pencil and paper, a journal might be best
- computer notes work if you have laptop or tablet with you, or most recent notes printed out.
Record what is important, or record daily for comparison purposes. Make notes during doctor visits. But most of all, it relieves you of having to ‘remember everything.’ That is self-care! ~Allie K, family member, Ontario 🌱
NEED ANOTHER CATEGORY? If you find another category where your comment would fit better, send me an email along with your comment and we will add the category. I truly hope that caregivers find this helpful. I can see, as it grows, each topic having a page of its own. For now, we take baby steps to grow.
THANK YOU FOR SUPPORTING CAREGIVERS.
You tip will be read and then posted to the category that seems right. Thank you. 🌷
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“Caregiver Tips” (c) 2020 Judith Allen Shone and contributors
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Find more stories like those found in this blog, more coping mechanisms, and strategies experienced by Judith Allen Shone in her Accepting the Gift of Caregiving book series, “Is There Any Ice Cream?” and “Did You Hide the Cookies?”
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