When a loved one is diagnosed with a form of Dementia, the most popular form being Alzheimer’s, multiple shifts occur. A role reversal where a child now becomes the parent to their parent, a family dynamic shift of those wanting to help and those that dont want to watch the disease progress, and a freindship shift where friends either step up or they dont.
When my mom was diagnosed with Alzheiemr’s disease we werent sure where to begin. For awhile the role all stayed put, it was early-stage alzhimer’s so my mom was not showing all the dementia limiations yet. This was a major time when my family should have been planning and asking questions, but we didnt. I felt shame that my mom was going to be part of the Alzheimer’s statistics. I needed guidance on how to plan for the future and they wasnt around for a caregiver under 40. Four years of caregiving and wishing we had done some things sooner rather than later made me want to create a starting point for other young caregivers. The biggest question after the fateful diagnosis is now what. Well here it is, your caregiver tips on how to begin dementia caregiving as a young caregiver under 40.
Tip 1: Talk with Your Loved One About Wants & Needs
I realize this one might seem like a no brainer, but for my family there was some avoidance with talking about needs and wants unless we were at the doctor. Our shame and fear stopped us from talking. That is NOT GOOD!
Talking with our loved one will allow you to advocate for them in the future. Knowing and asking wha they want when they can actually share their wants and needs is so important for the journey. It builds a relationship of trust and allows for you as the caregiver to understand your loved one better. This will be needed when they can’t communicate what is wrong, but you will know them so well that you will be able to solve all the problems. 🙂
Start by talking with your loved one with a wants or needs topic evey day. Have a focused conversation about what they like and don’t like. Talk about what they envisioned for their future. Discuss the hard stuff like end of life care. For example, my mom does not want a feeding tube. No way no how as she says it. Use resources like my <five wishes> or journal prompts to get to know your loved one better.
For those of you that a sentimental help your loved one make a book. <link to story>. I have never used this but heard wonderful reviews. The best place to start as a caregiver is to start by building trust.
Tip 2: Create a Bucket List
Not all planning for the future needs to be dreary, you should include some fun! Make a bucket list of stuff you would like to do with your loved one. Ask your loved one stuff they would like to do with you. Then put the list into action!
You heard me, dont just make a bucket list, actually do the stuff on the list! You don’t have to go crazy with it and items may be adjusted. The important part is that you are making memories with your loved one and building trust with them. You are sharing experiences with them.
My family loves the show Diners, Drive-Ins, and Dives so on our list is to try and go to one location around us once a month. For those of you that didn’t know food is a pleasure center and boy does my mom love good food :D.
A few other bucket list items:
- Take a sip and paint class together
- Go on hikes once a month
- Throw pottery
- Sign up for a class or two
- Travel to a destination you always wanted to go
- Visit a fancy restaurant.
Remember dont just make the bucket list do the bucket list!
Tip 3: Start A Care Plan
When I was an activity director for a skilled nursing facility each resident had a careplan. While this was a requirement due to regulations as a caregiver for my mom I have found that a careplan can help navigate the ever-changing limitations and behaviors that come with her progression of Alzhmeimer’s disease. Remember how in Tip 1 I said talk with your loved one, well here is where you put all of that information.
A careplan is something as simple as a binder with dividers that can progress or change as you need it to. My mom’s careplan has a few tabs:
- Medical: Includes Medical History, Medications She is taking, Her doctors and the history of when they were her doctors, special medical notes, any proceudures she had like mammograms, papsmears, or surgeries. We also include her health insurance information in here.
- Diet: This focuses on my mom’s likes and dislikes with food. What she eats on a regular basis and how much she eats. My mom enjoys snacking, dont we all! This helps us track what she is sacking on and if we can make changes to help her diet. As Alzheimer’s progresses we may track how much she eats of her meals if needed.
- Hobbies & Activities: This section includes what my mom likes to do with her free time. Right now my dad and I are going through activity trial and error. I document what works and the special set up that needs to happen. Mostly we want to know what activities we need available for my mom right now. Over time this will progress and be something we can provide to respite caregivers or hired support.
- Behaviors: This one has been newly added to our binder. I have found that it is important to track behaviors and moods for a few reasons. One to see if my mom needs support thorugh diet or medication and two to determine if medications need to be adjusted. I call my mom a few times a day and each day I ask how she is feeling. I track this then provide an overall for the month. In the appointment letter I provide to the doctor I share her overall behaviros and feelings as a trend. Behaviors are a big part of dementia and can be one of the biggest challenges, but are often summarized in not great detail. This helps my family have the detail.
- Important Documents: This section is for any legal or important documents we might need easy access too. My mom’s Important Document section includes the power of attorney form, the advanced directive she has, and her five wishes document.
- Financials: This section is optional. Right now my mom is recieving extra support for disability insureance and early social security due to forced retirment. My family tracks her income and determins what insurance will cover. This helps us to understand where we are financially for my mom’s future health needs.
Tip 4: Create a Loved One Medical History
When talking with your loved one help determine thier medical history. See how far back they can go. What are things in their families past that you should know about? Any history of hear disease or heart attacks? History of dementia or Alzhimer’s? History of cancer? High blood pressuere, kidney disease? You get the idea, I hope. Ask these questions.
If you are unsure where to start do a quick Google search for a medical history form. Print and fill out one that you think will best fit your loved one. In some cases your loved one may not be able to answer all the questions. If possibl reach out to their siblings or parents and ask if they can provide and information on medical history. The more you know about the history the more you can plan for the future.
Tip 5: Find Support For Your Loved One & You
Dementia is a journey and can be a very long journey. Your loved one will need support and so will you. Take some time to find that support for both of you. This can be in the form of a support group, a counselor, some clinics have specialized social workers. Find the support that works best for you.
As a way to get started check with the Alzheimer’s Association for patient support groups. These are for early stage Alzheiemr’s patients that have been diagnoesd. I didnt know about these until later and wish we had my mom in one of these groups.
Find a support group or support for you. There are a lot of virtual therapy groups out thier including TalkSpace and BetterHelp. I am in a virtual support group with Hilarity For Charity, which I highly recommend for young caregivers. You can also join some facebook groups or other online groups. You do not need to face these challenges alone!
Tip 6: Research Resources
Demintia comes in many forms, shapes, sizeds, and stages. With each stage you may need a new resource. Begin researching resources in your area now. Find some point of contacts. I live in a rural area so my resources are not the same for a big city. I had to spend time on the computer finding support care, and adult day care centers. Even some government programs were a challenge to get to us.
Begin researching early. Start with our county and see if they have any local resources for agining. California has a Department of Agiing that provides many resources and can beak it down by county. You might have something simliar where you live.
Research caregiver resources and trainings. This course from the Alzhiemer’s Association is a great way to get started and prepare for dementia caregiving.
Check out my resources page. I link to a variety of resources I have used or have heard positive things about. I also share some resources I have created for planning and preparing for my mom’s future.
Tip 6: Evaluate Wants & Needs For All Then Decide Next Steps
Start Planning now. Think about your family dianamics. How large is your support system? Think about your loved ones wants and needs and YOUR wants and needs. Yes your needs should be considered as part of the plan too!
After evaluating everything from who will be the primary caregiver and who will be support try to create a plan for your next steps. If you can, anticipate the challenges you will face and how you want to tackle those challenges. Consider a cargiver schedule so all the work does not fall on one person. Include your loved on as part of the planning if they are receptive.
My advice is to start by planning each quarter. Review appointments and conflicts. Assign daily caregivers, plan for activities. Each month or quarter your can re-evaluate wants and needs, what is working and what isnt, then replan the careplan and next steps.
Tip 7: Check For Clinical Trials
This tip won’t be for everyone, but decide if you and your loved one would like to participate in a clinical trial. Full transparency some clinical trials can be very time consuming and have a lot of appointments. Think about your want’s and needs. Check out Clinical Trials.gov to search options in your area and based on your loved ones diagnosis.
Before you go . . .
If you found the list of tips for ho to beijing caregiving as a young caregiver under 40 helpful.
If you want to learn more about my caregiving journey or resources I have created check out the Caregiver Resources page. You will find all the resources I ahve used and resources I have found. Essentially, I have done some of the legwork for you!
Always remember you are a badass caregiver and your loved one is lucky to have you.