Caregiving Tips

Disclaimer: We are not claiming to be professionals, these are just tips that worked for us that you might find helpful. Always consult your own medical professional before taking any course of action.

Stage 1: Beginning

  • Make large signs throughout the house. Experiment with color to be more eye-catching or simple black and white signs will work, the key is to use big bold print. Take a walk-through the living space and consider what are some phrases you find yourself repeating or worrying about now? Signs could say “THIS IS YOUR HOUSE, WE ARE YOUR FAMILY” which was a common one we used, “PRESS ON” by remote controls. “PLEASE WASH YOUR HANDS” next to bathroom sinks. “TURN HANDLE THIS WAY TO OPEN” next to doorknobs. These signs can also include sweet words of encouragement, “WE LOVE YOU”. Bear in mind the disease moves in both rapid and gradual declines. These signs can be helpful for months and then one day not provide the additional aid they once did. The key is to continue adapting to the changes as you notice them.

  • Baby proofing the home may feel harsh, but it’s one of the safest choices you can make. Do it early—offer a gentle excuse if needed—and you’ll thank yourself later. Outlet covers, magnetic cabinet locks, oven knob guards, window / door alarms, and double-cylinder door locks can go a long way in preventing accidents and giving you peace of mind. All cleaning products and cooking utensils need to be kept out of access. As a caregiver keep in mind your safety- proofing for an individual with adult strength. Be prepared for them to break through or destroy some of your child proofing mechanisms, so you may need to keep duplicates in stock. In our own experience Abuela broke through 2 deadbolts at various times, by sheer determination and persistence. Another useful tool is installing baby cameras inside the house in common living areas and their bedrooms. This won’t dismiss the need for someone to be on hand at all times but it does allow more peace of mind for yourself as a caregiver during your own daily routine.

  • Providing a simple toy or activity can be a wonderful way to keep someone with Alzheimer’s engaged. It gives their hands and mind something to focus on, which can reduce restlessness or anxiety and help the caregiver have some down time. It can also be an activity that you participate in together as a caregiver. This is a hobby you can both enjoy a moment with. In our experience, coloring pages and crayons, word find puzzles or jigsaw puzzles with large pieces, and play-dough or fidget objects can all work well. Supervise them and avoid small pieces they can put in their mouth.

  • We watched amazing things happen to grandma during even her most manic episodes when we played music. She would calm down, sing along, even say words after she had lost the ability to speak. Keep a small CD player or radio next to their favorite chair or bed and play old songs they listened to in their youth.

Stage 2: Middle

  • If a loved one has passed and they’ve forgotten, resist the urge to remind them. Repeating the news only brings fresh grief each time. Instead, offer a comforting response or gentle redirection—it’s an act of kindness that spares them unnecessary pain. Offer to take them for a visit soon but you simply can’t right now. If it’s possible suggest a walk together, even if it is around the inside of the house. Make up a story and stick to it. As a caregiver you need to redirect yourself as well. These moments can hurt and cause frustration, and you will be the one to remember them in the long run. In the beginning stages you’re going to learn to lie to them, a lot, you’re going to lie like you’ve never lied before. So help yourself to adjust to that as well. A lie is only as interesting as you make it. Why can’t we take them to visit their 120 year old mother? Well she just called and shes at the casino, you know how she likes to gamble, but she said to tell you hi.

  • Eating is a challenge before you notice any obvious problems. Think toddler habits without rules. They may be picky and say they aren't hungry, or start eating too fast and mildly choke. Number 1. cut up food and supervise them with eating. By doing this you will learn when it becomes time to take more of a hands on approach with assisting them. Number 2. Explore what they like to eat and try to incorporate that into each meal. If they like sweets, you can try natural options like dates and honey. Number 3. Accept calories over the 5 food groups. Understand if they are eating ice cream and cake better than healthy options it’s okay! Forcing healthy food may be fighting a losing battle. As the disease progresses, their eating habits change and they lose their sense of taste. However sweet is one of the last to be lost.

  • It might sound unusual, but this tip truly helped. Since Grandma had cared for babies from a young age, her hands and instincts were almost wired for it. Giving her a baby doll tapped into that deep muscle memory, offering her a renewed sense of purpose and comfort. Of course, she would sometimes drop the doll—so it’s important to never hand over a real baby.

  • Keeping the household as hygienic as possible will feel difficult depending on the current stage they’re in. It’s very common for those afflicted with dementia or Alzheimer's to spread or hide their feces in the early stages of the disease. As a care-giver trust your nose, if you smell something it’s very likely human waste and that means, it’s time to hunt it down. Keep wipes on hand in the main living / dining areas and bedroom. Wiping their hands down will help you keep them clean in between washes and help determine if they have been grabbing at things they shouldn't. You can consider making a mobile hygiene cart to help you filled with wipes and sanitizer but bear in mind if they are walking around, that it could act as an impairment in their way or a risk for them to accidentally misuse.
    Additionally keep door knobs and, sink handles regularly sanitized. In the beginning stages there were many times we would clean grandma, go to wash our hands and realize we still smelled waste. We felt like we were imagining things or perhaps the smell was stuck in our nose. After a deeper search the waste was discovered discreetly spread underneath the faucet and handles.

Stage 3: Final

  • Adult sized waste has a strong smell, especially for individuals on strong medications. When all of the clean up is done it can still leave a lingering smell in the air. A couple of tips for that are to circulate the air using ceiling fans and open available windows when the room can be constantly supervised. Even 15 minutes still helps. Another tip is to use an air filter. Running the filter before any diaper or toilet changes and for 30 minutes after can help with lingering smell pollution in the air. In the final stages when they are no longer mobile, you can leave filters running and windows open since the risk is gone of them escaping. Lastly, burning incense was a lifesaver, but air circulation is critical to reduce any stagnant and stuffy environments.

  • The time to call hospice can vary case by case. In our own circumstance we called hospice 2 years before our Grandma passed. They came during that time regularly and educated us on how to care for her and even advised us on when it was time in their professional opinion to move her to the bed full time. We had been worried about the bedridden stage for years pushing off it’s oncoming approach by taking the literal weight and burden ourselves of moving her body for her, however, hospice treated us with an abundance of kindness and understanding during this transition. They provided us with new tools for our metaphorical care giving arsenal and they were a comforting listening ear when we shared our daily thoughts and concerns. They have a variety of workers in their team that they can provide to give assistance during this time. This included a chaplain who would come to provide spiritual comfort and even a musician on staff who came a few times to play songs for our Grandma. The bond we made with our hospice team the final 2 years was vastly superior and more helpful than any other medical assistant we had tried to hire on in the entire 16 year journey, bar none.

  • As early as the beginning stages keep an eye on their levels of mobility. However, try to help them maintain their independence as much as possible in order to preserve their dignity for as long as possible. Walks and outings should always be chaperoned especially in the early stages when mobility is stronger. The disease does not provide a road map of when mobility will rapidly decline. It could be one day to the next that they are no longer able to walk. Try not to move them yourself if you can help it otherwise you risk injury to them and yourself. If you are unable to have a regular aid or family member assist you with movement there are online organizations available that can teach you how to move individuals safely using gait belts and transfer straps. We will list some below in our resources tab. During the time the afflicted are able to carry their own weight with assistance, using walkers while supervised to help them have stability getting up and down are also helpful. There may come a time they are no longer able to sit upright on their own and it becomes evident for the primary care giver that they will need to be bedridden full time. Organizations such as Hospice can come assist and educate care givers on how to keep the patient clean and dry and comfortable. Remember as a care giver that when they become bedridden that you did not do anything wrong and you are doing your best.

  • During the last few years Grandma was alive we knew she was nearing the end of her journey, although we didn't know when it would finally come. We spent time regularly talking to her, and invited family members to spend time with her who hadn't for years. During this time it can be helpful to keep a journal to reflect on. It is also helpful to continue talking with them about your memories together, and sharing your feelings. Since we are a faith based family we spent time in prayer alongside Grandma. It can be helpful to seek additional spiritual guidance during this time to bring closure and peace to your household. Hospice provided us with a chaplain who routinely visited, and since Grandma was always a devout Catholic, the Archdiocese sent a priest to our house to provide her with her last rites.

Resources