Now that you've decided to reach out and ask for help (not only for your loved one but for you indirectly as well), isn’t it interesting how you go about your day to day business and until you are placed into the role of family Caregiver for your aging parents/loved one, you don’t realize that there is a whole world of information and resources available to tap into. It wasn’t in your radar before and now it is.
First of all, how do you know what supports you need now and what can come later? Sometimes it will be obvious. You may get specific requests from your loved one. You may just observe the challenges your parent is facing. It will be pretty straightforward –most of the time.
Sometimes you need to dig a little deeper on your own to uncover any issues. Start off with giving your loved one a hug! During the hug, gauge her level of strength –it is strong or weak than expected. Has she lost weight? –is she eating enough and are they healthy choices? Use your nose –is personal hygiene compromised? Have a look in the fridge. Is there a variety of food that is still in good condition? Is the mail piling up? Start by opening a casual conversation and check in with your loved one and see what she says. These are a few simple checks you can do without feeling like you are imposing.
When you (and your loved one) recognizes the need for some additional support, you can choose to make an appointment with her family doctor. You can discuss the concerns and receive guidance as to the next steps. Depending on the concerns, the doctor may have additional questions or request a test or two, just to rule out other reasons that might be capable of causing the concern. It is good to rule that out so you can focus the right kind of support.
You can also choose to contact Home Care to request an assessment. An appointment will be arranged by the Home Care Nurse who will come out to talk with you and your loved one. You will have the opportunity to share your concerns even if you aren’t sure yet what the solutions are. She will give you a list of local resources that you can tap into. She will be a great resource for both of you going forward. There is also a wide range of resources available here.
These are a few starting points to tap into when you find yourself wondering “what do I do next?”
I'm feeling overwhelmed with this Caregiver role and it is impacting the other areas of my life. Am I being selfish about this?
It’s a marathon, not a sprint.
It's important we revisit this topic every once in a while to remind ourselves it's ok to make time for YOU and it's NOT being selfish. The bottom line is you can't pour from an empty cup!
You are a family Caregiver. You love your loved one- there is no denying that. The fact is, Caregiving, in all capacities, takes a lot of time, effort and physical and emotional energy. It is easy to become overwhelmed and anxious when you feel like it is all on your shoulders. It is crucial to take good care of yourself.
One way to take good care of yourself is to watch your thoughts. Caregiving is one of those roles where you do the best you can and all the while need to be diligent and ensure your thoughts “won’t take you out”! I’m talking about nagging thoughts like “you’re not doing this”, “you’re doing too much of that” along with the dreaded “What if…?” Check in with yourself when you notice these thought patterns coming up. Use your awareness of their cycling as a trigger to stop. Catch it in the act and redirect to thoughts that are more useful, peaceful and energy restoring.
Another way to take care of yourself is to take time for yourself. It is not selfish. Start by building a Support Network around you. Take inventory of all the people you know. Reconnect with them and share what you are looking for, what kind of support you need, the time commitment and if they are someone you could call in a pinch. Let them know that you can provide the guidance they need to be able to be a successful support with your loved one. Next, research the community supports and services in your area and phone them. Ask questions and get information specific to your situation. This research will help you know who is available and how they can help you and your loved one. You can build a schedule around the needs of your loved one.
Building and using a Support Network will give your loved one new interactions and experiences to enjoy while you can have some time to go out and see something new or rest and recharge. There is no prize for doing it all by yourself but huge rewards to both you and your loved one when you keep yourself well. Reaching out and accepting help is essential for you and your loved one’s well-being, after all, Caregiving is a marathon not a sprint.
If a dark cloud comes.
Dark clouds. We see them almost any time of the year. They usually signify a change coming. Wet weather, perhaps cold, causing us to seek shelter, hunker down and keep close everything we feel we need to keep ourselves comfortable until they pass. Figuratively, when a dark cloud comes, it means that a heavy feeling is upon us. This makes us tired, perhaps sad and can cause the same sensations mentioned above that move us to seek comfort and protect ourselves from them. They can really grab hold and if they do, it feels like the dark cloud might stay forever. Until we realize, we remember that dark clouds have come before. We remember the work we have done and the tools we have to help ourselves move the clouds on. Thank goodness for that.
What if you see the dark cloud over your loved one? Meaning- what if your loved one has developed a bleak outlook on life. Perhaps she is processing a big change. A change in location, the passing of a spouse, or a health concern is troubling her. You do as you always have, you honor how she feels, talk with her and you do your best to support her. Sometimes you find yourself running low on energy. You may ask yourself “do I keep trying?”.
The answer is yes.
First, recoup your energy and take care of YOU, so you can put your detective hat back on and investigate a little more into the circumstances of the situation and your loved one. Take note of any changes you see- behavior, outlook and overall ability to take care of herself or make decisions are a few places to start. If you haven’t already, make an appointment to see her doctor. Update and share if there have been any major changes in her life and share your concerns. Have the doctor review the list of medications to be sure there aren’t any working against one another. Talk about loneliness --is it a factor? Grief? How is her diet? Once you start investigating, the clues will direct you to next steps. Find out what community resources are available. Remember to reach out to your Circle of Support for ideas and references. Remember the tools you use to help yourself and see if your loved one is open to them.
Above all, keep yourself well as you go through this process of discovery. By doing so, your loved one has the best chances of moving those dark clouds away!
What the heck? Invest in Play? When I think of the word “Invest”, I think of a well-researched, thought out plan, weighing the pros and cons, through the lens of my desired goals. Mostly I think in the area of finance. When I think of the word “Play”, I think of free-flow, undefined time, youthful (I like the word goofy!), creative, colorful and of having an unexpected outcome. The outcome is not even the point of play unless of course you are competitive and are playing a sport.
You probably have never examined what transpires when you and your girlfriend get together. Aside from the enjoyment you get spending time together, you probably meet to discuss a few topics important to each of you. You listen and may offer some feedback or anecdotes in the spirit of helping her out. In doing so, you may have heard your own words and thought “Wow! That’s a message I needed to hear myself.” Maybe you saw your friend’s face light up after hearing you and realized it rang true for her too. A happy outcome for both of you. You didn’t anticipate it. You were simply invested in the moment and the outcome just happened.
Let’s bring this concept “invest in play” into a companion visit. It takes time to get to know someone new. Being a good listener and asking questions helps to learn more about the other person. For example, a senior who enjoyed having his hands busy would most likely have plenty of stories to tell about his workshop or being out in the garden. He may complain about physical ailments that prevent his hands from being as busy as he would like. While we talk about his interests and listen to his stories, I watch. I watch to see how he holds his mug of coffee. I watch when we play a game. I notice how he is able to pick up dice. How he follows steps in the game and make decisions and choices. I learn so much during our time together. This is what I call Investing in Play. It is through play- the interacting together in the form of a friendly visit that I learn his capabilities and his challenges. I think of ways to work around the challenges or avoid them all together. Investing in the time to come up with modifications or even other activities that would keep his hands busy and bring back that enjoyment from an earlier time. This is a true investment with no expectation of a certain outcome. Just play. Just time well spent together with the highest enjoyment!
Last month, we mentioned how using strategic little cues for a loved one with memory impairment can make a big difference in keeping a greater sense of independence. When determining what cues to put in place- first identify where, when and how your loved one is struggling and the resulting impact from it.
Perhaps she is having trouble with her morning routine. Her usual routine had always included getting up, making the bed, picking out and then changing into daytime clothes, washing her face and then brushing her hair. The steps are in a reasonable order and the routine is very relatable. I’ll bet you do them without even paying attention to it- it’s just what you do every morning! Each step builds on the last to arrive at an expected outcome- being dressed and ready for the day ahead. An individual with memory impairment may need the use of cues to help her along the process. Let’s say this lady gets stuck at the clothes part and you find that she is wearing the same clothes day after day. Because you know her and her preferences, this is something she would never do. This is the impact of a failing routine.
Now keep in mind when looking at the impact of a failing routine, you would also factor in the level of risk it has to the person. In this example, not changing her clothes as frequent as she did before is not life threatening. Knowing her preferences and personality and yes, if left long enough this failed routine would interfere with a healthy lifestyle not to mention be very hard on her clothes, so additional support is needed.
Consider her personality. Has she always been a list maker? Would she benefit from a well- placed list entitled “Morning Routine” with the steps laid out in point form? Perhaps her hamper is changed to one with a lid. On the lid is a label that says, “dirty clothes” or “Needs to be washed”. The label and the lid are additional barriers to what she doesn’t want. Perhaps the Morning Routine List includes another strategic step such as “pick out clothes from your dresser” to also help direct her. The list would be posted in an appropriate place where it won’t be moved or in the way of the process itself. Make it attention grabbing without interfering with the message. It must be clear. The writing is large enough even without glasses. Test it out over a few days and track the results. Tweak as needed. Make sure everyone who comes in contact with her is aware of your cues, so they are not tampered with.
Having little cues in the right places will help maintain her routine and maintain a sense of comfort and independence in her life. You and your loved one will feel happier for it.
Have you ever traveled and checked into a hotel? I had to go to Toronto for a seminar years ago. I got off the plane and followed the directions and the crowd to the baggage area. Signage helped me locate the correct turnstile, I kept an eye out for my bags. Colour and a distinguishing feature helped me recognize them coming down the chute, I grabbed them and was on my way to find a taxi to take me to the hotel. This was the first time in Toronto and I relied on the cab driver to safely bring me to the hotel in the most efficient and direct route. I trusted him to do his job and he did. I was happy and felt cared for.
At the hotel, there were more cues and signs that helped me understand where I needed to go and get the help I needed. The lady at the desk asked me a series of questions and my answers gave her the information she needed to give me back what I wanted- a nice, comfortable, secure room. She did her job. I was happy and felt cared for.
Signage, processes and invested people who are ready and willing to step into service to assist, all work together as a system to help individuals get want they want. In this case, it was my bags, a ride and a room. When systems are not in place or they are unreliable, then the process can cause upset, frustration and even panic.
Change in general, even in the slightest of ways, demands more from a person- more concentration, a higher level of listening and a greater ability to process information. Step into the shoes of a person who has just moved into an assisted care facility. A new space, sights, sounds and faces to take in. The individual may be wrestling internally with perceived expectations of others who are new to their world. People like other residents who may be confused or who require support in ways different to the individual.
This is where little cues can be a big help. Aside from the standard and expected signage to help navigate a new resident to the dining room or activity room, and the uniform colors worn by staff to differentiate their roles, there are lots of opportunities to create and include other cues specific to the individual’s needs. In a hallway with many doors, a family can decorate their loved one’s door specific highlighting what makes that individual special. (Remember when we discussed the importance of knowing & understanding one’s “life story”?) Perhaps it is an ornamental dog that sits on the floor by her door. She can see it farther down the hall and associates it with her room. Perhaps she enjoyed painting. Displaying one of her paintings- like the one of a barn and horse from where she raised her family, will create the recognition as well as a chance to reminisce. These are a couple of examples that fulfill a helpful role. Repeatedly it reinforces: “This is my room.” or “I used to live on a farm and we had horses.” or “I love colors and painting.” These all contribute to the feelings of comfort and security. Like me in Toronto- feeling happy and cared for.
Building a healthy relationship with your aging loved one.
Life Story Part 2: "Knowing who I am means a lot to me"
Last month we spoke about the significance of capturing a loved one’s Life Story. It was mentioned that the key details from the story can be very powerful in building relationships and providing comfort in new surroundings, after a move.
The Life Story can also be beneficial in another way. Key details reveal qualities about the individual’s personality and preferences. How he expresses himself [“Call me Bill.” VS “You can call me Mr. Johnson”], how he sees and responds to circumstances [he was an accountant who prided himself on performance excellence VS he is a fine artist who focused on metal sculpture]. Insights to his preferences [“I would like a snack –something crunchy will do.” VS “It is time for my 2pm Earl Grey and biscuit."]. Access to one’s Life Story can provide great insight which is needed for positive and meaningful interactions-- increasing the quality of time spent together.
For the gentleman who prefers to be addressed by his surname, who values details and precision and who keeps to a defined daily regime-- he will have a different experience in his day, have different expectations from others and require a different approach than the laid back, artistic fellow who enjoys variety and the spirit of the unknown. For anyone wanting to be a part of someone's life, each person needs to be honored as they are.
Building a healthy relationship with your aging loved one.
Life Story Part 1: "Meet me where I am"
What sums up a life? What makes it into your Life Story? You’ve had so many experiences in life- some you would label good and others bad. Everything else is a measurement in-between. If you were to create your Life Story, what would make the cut? What moments have you forgotten? What lessons are so close to you that you can’t even “see” them anymore because they are so much a part of you now? And hey, what about the fact that you are still living? Essentially still writing your story! Who is to say that your biggest life lessons aren’t still to come? Who is to say that the biggest breakthroughs and “Ah-ha” moments aren’t ready to reveal themselves in the next few years, days or even hours.
One thing you know is so far, your life (or rather your experiences in life), have shaped you into the You that you are today. You are still being shaped regardless of your age. A person’s needs can change throughout their life. We wrote about Needs last month. Consider the experience of an individual of a certain age, who is moving out of his longtime family home to somewhere with more support for his current needs. The move is an adjustment to routine, with new faces, new food, new address and phone number- new everything! Change isn’t necessarily bad, but it is different, and it takes time to establish his bearings. It takes time to become comfortable while settling into the new space. Consider that this individual has some memory impairment. Building those new bearings and comfort can be more challenging.
Enter in the power of the Life Story. Imagine how would the staff at the care facility relate to this gentleman better when they knew key details that define (in his eyes) who he is in his life. Imagine the depth of relationship he would have with a supportive companion who knew that he prided himself as a community involved man in his younger years of retirement. Imagine the quality of their time together when it is evolved around more meaningful activities and conversations that encompasses and celebrates those key details from his Life Story. It sets up the opportunity to create the space for new experiences, learnings and exploration together even at this time of his life. Giving him the opportunity to continue adding more chapters to his Life Story.
We all have needs. They may change at different times of our life given circumstances, but there always seems to be a few core ones that never go away or lessen in our lifetime. If we pay attention to them and speak up and they are met (either by others or ourselves), then we tend to feel good, safe, secure or content. If our needs are not met, if we aren’t aware it is a need, if we are too shy to speak up- then we don’t feel good. We may look outward and blame, get angry or sad. We may look inward and think we are not worthy. When needs are not met, I am sure you would agree- that we feel bad.
What if you could no longer effectively communicate what your needs are? If you spoke and others who could help you, didn’t understand and so they didn’t/ couldn’t help? What if they did understand but didn’t know how to meet what you were needing? It would be like asking someone to scratch an itch on your back and they don’t get that spot even with your directions. It would be frustrating and most likely would cause upset. IE: Out of frustration you might think: Why can’t you understand? Are you stupid? Or outbursts IE: slapping a person’s hand away, leaving upset, yelling or sour looks. It would be agonizing and exhausting for both the person with the unmet need and the person trying to help.
Speaking up is only one part of the story when communicating needs. A person with dementia may not be able to communicate their needs verbally and so we need to look at the larger picture. Put your detective hat on and investigate the clues. In addition to what the person is saying, what is this person feeling? How is this person behaving? What do I know about this person’s life story? Consider too what was going on just prior to the upset. Perhaps there are additional clues and insights there.
Visiting another lady in a care facility, I was wheeling her through the empty dining room- we were just touring around to see what we could find. She started to become agitated and said “I can’t do it! I can’t do it!” She was really stressed. When we passed through to a quiet area, I turned to face her. I knelt down and took her hands in mine looked her in the eye and with a smile said “There is nothing to do. We got it all done and thank you so much for your help!” I didn’t know for sure what caused her upset, but I had a hunch. Going through the dining room with all the tables nicely set with tablecloths, place settings and such may have triggered a memory or past feeling of preparing for a social gathering- I knew that was a big part of her life. Feeling like it was too overwhelming a task to do now, she expressed anxiety and upset. She needed reassurance, that all was taken care of and even acknowledgement of her contribution for a job well done. Her smile and softened shoulders confirmed my hunch was right and we both carried on.
Empowering Another Without Interfering
I recall visiting a lady living in a care facility years ago. I met her in the hall and we sat to look outside at the spring flowers coming up. A series of small strokes in the past had resulted in her limited speech. She could answer yes/no and occasionally a short, clearly spoken phrase. I had been visiting her twice a week regularly for about 8 months or so and we had gotten to know each other quite well.
On this day, she grimaced, and her hand went low on her stomach. “Are you in pain?” –Yes. “Is it an ache or like someone stabbing you?” Nothing. “Is it an ache?” –No. “A stabbing?” –Yes. “Well that doesn’t sound good. Why don’t we go to the nurse’s station and see what she has to say?” –Yes. I wheeled her there and called the nurse’s attention. She came over and ask us “What is wrong?” I crouched down next to my lady and looked at her. I provided the context of what had just happened and my lady’s decision to come to the nurse’s station. I gave them the space to communicate from there. As needed, I filled in more specifics as to what I saw and what I understood from my lady being careful to not diagnose or step in where it was not my role.
Those clues helped the nurse ask more specific questions which my lady was better able to answer. The three of us contributed to effective communication. The nurse could make a plan to help her now as well as a plan to monitor her later. A couple of days later, I learned from my lady’s family that she had a Urinary Tract Infection (UTI) and was being treated. Good to catch that early. I was glad to be able to help my lady access the assistance she needed.
When our loved one is in pain, we want to do everything we can to help her. Sometimes the most efficient and effective thing we can do is to listen, to acknowledge what she is saying and observe what is going on. By doing so, we empower our loved one as well as those around them, allowing for better understanding and assistance.