When a loved one is diagnosed with Alzheimer’s disease there will almost certainly be issues relating to family relationships. First, normal roles change. A son suddenly becomes his mother’s caregiver, reversing their lifelong roles. Over time, a couple’s relationship changes as caregiving becomes the priority. Life plans, retirement plans, all the things you put off for the future, those things change and may in fact disappear completely. Roles of the caregiver change within their own family as well; a caregiver’s children may feel infringed upon when Grampa needs mom’s constant attention and focus. Continue reading “Family Dynamics – Facing a New Normal, Together” »
Stefanie, family care specialist
Stefanie helps families every day! Ask and read about common challenges here.
We hear from a lot of people about the challenges of traveling. While traveling can be a wonderful respite for everyone involved, especially in early stages of the disease, it does require special planning. Travel impacts routine, schedule and familiarity (with people and surroundings), all of the hallmark comfort criteria for people with Alzheimer’s. Changes in routine and location can trigger stress and disorientation. Each person’s situation is a bit different; talk with your loved one’s doctor about your particular travel plans.
General Travel Tips
Whether a quick trip in the car, or a long-distance trip across the country, a bag of essentials should always be at your side, including extra clothing, snacks, water, medications, activities and relevant toileting supplies. Carry meds in their original prescription bottles. Always carry emergency contact info, photocopies of important documents (insurance, medications, Power of Attorney, advanced directive) and a recent photo of your loved one (in case they wander). Have your loved one wear identification indicating that they have Alzheimer’s, or consider GPS enabled shoes if they won’t leave an ID on. Enroll in the MedicAlert® and Alzheimer’s Association Safe Return® program.
Consider an anti-anxiety medication for travel, and ask whether it is okay to take a “dry run” prior to the trip; some people experience side-effects. Perhaps even take a mini-trip trial run prior to a lengthier trip. Know your limitations and strength. If there have been difficult moments controlling agitation or anxiety in the past, realize that could re-occur. You should consider wearing identification yourself indicating you are a caregiver for an Alzheimer’s patient. If something happens to you, authorities know there is a possible issue with your loved one, especially when traveling.
Visiting family can take your loved one back to a place where they grew up, triggering forgotten memories as well as providing distant family a chance to re-connect. It can also provide respite to you as caregiver. Schedule lots of downtime, consider eating meals at home, and remain on a normal schedule. Can you bring your loved one’s pet, or a favorite pillow or blanket? Ask your host family members to “Alzheimer’s proof” their home. If relevant, prepare family members – especially children – for any hostile or unusual behaviors that may occur. If the host home is too chaotic, consider staying in a hotel so there will be a quiet retreat available.
Minimize chaotic locations or activities where locations are constantly changing (sight-seeing tour). Disorientation can quickly occur, triggering stress and possible behavioral issues or wandering. There are logistics and safety concerns relating to transportation, hotels and meals.
If you decide your loved one and you are up to the task, you might still consider bringing help or looking into whether help is available at your destination point. As much as you can, have a Plan B, starting with travel insurance for the trip, in case a trip must be cancelled at the last minute. Some travel insurance may not cover dementia. Make all tickets refundable and changeable.
Many people travel with their loved one with the goal of respite for all. Unfortunately, sometimes that isn’t realistic. If respite is truly your goal, don’t feel guilty about scheduling your own trip as a break from your caregiving duties. Have a family member come to stay with your loved one while you take a break. Your mental refresh will help everyone involved.
Book your flights so you don’t have any tight connections or layovers. Allow extra time for everything. You might request a wheelchair whether your loved one needs it or not. TSA Cares is a free helpline to help you with any special needs relating to security screening and carryon luggage (should you need to bring medications or supplies). Book a middle seat for your loved one and keep the aisle seat for yourself; this enables you to keep them in their seat, while still allowing a trip to the restroom without climbing over other passengers. You should carry all documentation, including passports. Board early. If your loved one is in a late stage of Alzheimer’s you could consider a medical flight service.
Notify your hotel that your loved one has Alzheimer’s. You may want to order room service until your loved one feels more acclimated. Bring a water-proof bed-pad for the hotel bed if incontinence is a concern. Bring a night-light to ensure a well-lit path to the bathroom. Purchase bells and tie on your loved one’s shoe strings or on the hotel door-knob, to alert you to potential wandering.
Bottom line is that a trip with your loved one can be a great idea if they are up to the trip and if you have a flexible and adaptable attitude. Don’t take things personally if it doesn’t work out, sometimes the break from routine is just too much for people to deal with. Once home, also recognize there will probably be an adjustment period before your loved one gets back into their pre-travel routine.
After being diagnosed with Alzheimer’s disease, how long can you remain independent? In the early stages of the disease many people are able to retain their independence fairly well and the mental health benefits of remaining self-reliant are huge. Attempt to keep active and engaged, and continue doing the things you enjoy.
At the same time, it’s best to educate those around you about the changes that will occur as the disease progresses. Educating people helps them help you remain more independent. Talk to your employer about ways to continue working, perhaps reducing your hours or responsibilities. Ensure your home is safe; check your home for ways to reduce the chances of a fall or a fire. Consider finding alternatives to driving; remember the disease impacts your judgment as well as physical abilities, so you will have to make unpleasant adjustments as the disease progresses. Use the Alzheimer’s Navigator tool to help with mapping out your long-term care strategy, and get your legal and financial matters in order; do it while you can be an active participant and decision-maker. Continue reading “Staying Independent – “Help me help myself”” »
Due to an aging workforce, finding employees diagnosed with Alzheimer’s disease is becoming more common. While many people can remain at work in the early stages of the disease, each person’s situation is unique. Talk to your physician and caregiving team regarding how your current set of symptoms will impact your ability to work, and keep revisiting the conversation as your symptoms change. Depending on your particular job, you may need to transition out of work sooner than later, for example, if your job involves driving or utilizing skills that may be more challenging with Alzheimer’s.
If you are able to continue working, try to create a transition plan with your employer, perhaps reducing hours or taking a less demanding role. Educate your employer about the disease as you discuss your options, you may even want to bring a caregiver or advocate with you. You may find that your employer and even your Human Resources department may have had little training or exposure to the disease. Unfortunately, many companies that have stellar childcare benefits and support resources haven’t caught up with eldercare disease issues. Continue reading “I’ve Just Been Diagnosed With Alzheimer’s. Can I Still Work?” »
If you have been diagnosed with Alzheimer’s disease, one of the many difficult decisions you will face is when to hang up your car keys. Driving is such a routine freedom and pleasure that for most people it is quite painful to think about losing that independence. But the disease impacts the concentration and quick reactions that safe driving requires, so needing to stop is inevitable. The question of driving – whether to continue and if so, for how long – needs to be evaluated as part of your ongoing health planning.
You’re likely to have conflicted thoughts about giving up driving, so acknowledge and share your feelings about it. Talk with your caregiver about how the driving decision should be made, balancing your desire for continued independence with the need for everyone’s safety. In the early stages of the disease, you may be able to simply transition your driving to be more limited, perhaps only driving familiar, short drives during the daytime. You could use a GPS tracking device to reduce a caregiver’s concerns. Continue reading “Hanging up the Keys” »
Caregiving can be extremely rewarding, but all caregivers will eventually feel some degree of frustration, anger and guilt. These are all normal emotional responses to an incredibly emotional journey.
As a caregiver, you may feel frustrated and angry at your chaotic life, or your lack of control over the disease’s progression. Anger often evolves into guilt. You may feel like there isn’t a light at the end of the tunnel, and have the guilty thought, “how much longer can this go on?” But understand, feelings can’t be denied. They can however be changed to some degree by adjusting your perspective; for example, you may feel less frustrated with your loved one’s acting out if you can remind yourself that they are not doing it on purpose, it is part of the disease. Continue reading “Taking Care of You – Part 3: The Guilty You” »