In the US, about 5.3 million people of age 65 and older are living with Alzheimer’s today. National Institute on Aging states the prevalence of Alzheimer’s doubles every 5 years for people of age 65 and above. The news of Alzheimer’s (a type of Dementia) diagnosed in your loved one is heartbreaking especially when that loved one is your parent. Seeing him/her progressing in Alzheimer’s is emotionally hard. Try not to lose heart as there are lots of actions you can take to take care of your loved one. Although you cannot change the diagnosis, planning ahead to provide care is a precious gift that you can give to your parent, especially as they progress in this disease condition.
Different people show different behaviors and progression in Alzheimer’s with worsening symptoms, needing more time, support, and attention from you and professional caregivers. Alzheimer’s progression is typically classified as mild or early stage, moderate or mid-stage, and severe or late stage. Know the symptoms of the early, middle, and late stages of Alzheimer’s. This will help you plan better and plan ahead with an evolving and proactive care plan to follow and be prepared for the journey better.
If your parent is diagnosed with early-stage Alzheimer’s, it is in some ways good since early diagnosis will help you significantly slow down the disease, stay in touch with them and plan for the future. The affected person usually behaves “normally” and does all their typical daily tasks and even complex ones (e.g. planning budgets) by themselves without showing any symptom of memory loss or cognitive impairment. You may not feel the need of caring for them and you remain uncertain about how much help your parent needs – But, ironically, in many ways, this is the most important stage to execute a planned and professional caregiver journey since it will help you significantly slow down the disease progression of your loved one by years:
A few key things to keep in mind during early-stage Alzheimer’s
The early days of Alzheimer’s can be like a roller coaster of emotions for your parent. You may sometimes find them sad, alone, angry, frustrated, grieved, denied, or overwhelmed. Let them express what they feel and then try to calm them by making them busy and redirected in their daily tasks. Learn to identify these symptoms, track and log their frequency, and comfort them when you notice such emotional changes. However, if you feel that your loved one is more severe in any emotion or for many days, then discuss it with their doctor – and especially share your log of such symptoms (e.g. times, dates, triggers) since these are invaluable in your doctor and care team’s ability to pinpoint and plan care.
To slow down the progression of early-stage Alzheimer’s, you may find the best way is to help them organize their daily routine. Observe the simplest routine that they can follow, discuss it with them and help your loved one (and everyone else around them) to follow that routine so it becomes an unconscious habit and helps them avoid getting angry, frustrated, or overwhelmed.
Try to include exercise, good diet, good sleep, and other mental health improvement and stress management activities like solving puzzles, riddles, or crosswords in their lifestyle.
Organize their pills in a pillbox so they won’t miss any of their medication. Their important documents should be in proper places in case you meet any emergency.
Taking these steps will take patience, many false starts, and persistence from you and your professional caregivers but structure and habits help tremendously.
In the early stages of Alzheimer’s your parent may face short-term memory loss so help them in remembering their tasks. You can set reminders (especially with pre-programmed visual and audio cues) for some important tasks like appointments, exercise, medication timings, bill payments, etc…
Help them in making decisions especially in financial matters. Keep an eye while they pay their bills online or physically to support them stay independent but not get overwhelmed and frustrated by what they otherwise thought of as easy, simple tasks in the past.
We know that things and thinking change when someone is diagnosed with Alzheimer’s – not only for the patient but also for the family and the caregiver. But the more you can keep your calm, the better it will be since your parent will need time and space to overcome their emotions.
Do not start implementing do’s and don’ts on them at once. Instead, let them do their tasks independently (while staying as a backup to avoid major financial or health mishaps), and help them enjoy events and social gatherings with family and friends where possible.
Though a patient with Alzheimer’s first stage can live independently, there are chances that they will face trouble in seemingly simple tasks (e.g. finding their way back home from a walk in the neighborhood). Again, a watchful eye, a calm demeanour, and professional caregiver support will help with these.
If possible, try not to have them live alone or arrange for a caregiver to be with them at all times if you are away for work or other commitments. Secondly, make their houses fully secure from any hazards. Check for alarms, locks, wirings, expired products, etc…
It would be great if you ask them to keep their ID card or medical ID bracelets with them, especially when they go outside. Turn on the GPS of their phone and add your contact info in the emergency contacts of the phone.
Always have an alternative plan for any possible emergency.
When Alzheimer’s disease in your parent is at the middle or moderate stage, it will become much more important to take care of your parent and plan ahead. Professional caregiver’s help and support will become a necessity for them because they will be dependent on many tasks.
In this stage, they will typically experience extensive memory loss as a result of brain cells getting damaged. You will typically see worse symptoms like they will not be able to live alone, or not recognize some friends and family members. Their communication is unclear and mumbling, and sleep gets disturbed.
You can try these care planning methods in this stage:
It is advisable to appoint a professional caregiver or in-home care services for your loved one for long parts of the day (typically 8-12 hours per day). In mid-stage Alzheimer’s, the need for caring increases to a level where the patient needs someone almost all the time – even for tasks like eating, sleeping, bathing, maintaining basic hygiene, etc. It will be typically difficult for you to manage all that especially if you need to attend in parallel to your own routine, work, and family.
Appointing a professional caregiver will not only lower some burden from your shoulders but also take care of your parent according to their needs and condition.
Having a helpful routine from the early stages of Alzheimer’s to its progression will be very beneficial for your parent. Make some healthy changes in their routine according to their condition. Do not forget about their appointments or medications. Discuss everything with their doctor or experts in this field and get advice according to their current situation.
Try to give them a sense of purpose and consistency in their routine. By keeping things and tasks in their places and time will be very effective for patients with this disease. Let them enjoy other daily tasks or habits that they love doing.
As your loved ones will not be able to drive or go outside by themselves, it is important you and your professional caregivers fulfill their social needs like taking them to parks, social events, visiting friends or family. Making them social with the outside world makes a positive impact on them and very much helps in slowing the disease. Going for walks or on drives with them will help them find a semblance of normalcy and feel relaxed, contented, and lively.
You will find your loved one having trouble communicating at this stage. They may repeat some things very often and forget basic things, get confused, terrified, or use gestures. Do not let yourself get angry or frustrated as they are led by changes in your body language more than your words. Stay calm, patient – for example, answer the same question the tenth time like you have been asked that for the first time. If you get frustrated, it will lead to more escalation and confusion and not help.
Similarly, you will need to learn how to communicate in a better and more impactful way. For example by using more nouns or being more specific about details in your talkings help them to remember things. Do not tell them or don’t try to recall some memories that could be unpleasant for them.
Taking care of a parent with mid-stage Alzheimer’s will be very difficult or exhausting for you sometimes. You should also take care of your health, family, work, and social life. Plan your professional caregiver to help you plan ahead with respite care for you at least once or twice a week.
We would encourage you to join communities or groups where people with Alzheimer’s patients or parents come. The Alzheimer’s Association is a great resource and their online message boards and in-person local chapters are valuable resources for you. You can talk to highly experienced caregivers and learn from their experiences and the experiences of sons and daughters in similar circumstances and pick up many invaluable and non-obvious tips to plan and cope better.
Late-stage Alzheimer’s has severe symptoms. Your parent needs your or a professional caregiver’s help or presence for the whole day even when they are asleep. They find difficulty in eating, walking, and talking. Since things are fluid and uncertain, caregiving demands increase day by day, it is typically impossible for you to not have a 24/7 care model and care team. In this condition, you can plan these strategies for their health and well-being.
It will become necessary for you to appoint an in-home caregiver who looks after your parent 24/7. Your caregivers need to be highly experienced and nuanced at this stage and typically should have at least a decade or more of professional caregiving experience at this stage.
Although your parent will find it difficult to recognize you, you can still connect to them by using other senses. Talk to them while holding their hands, reading their favorite book, playing their favorite music, viewing old photos with them, and cooking what they love to eat. The tactile touch of a familiar and loved one will help them and these types of connections will be helpful in boosting their moods, making them feel relaxed or responding better.
In this stage, your parent’s care needs will span the range of clinical, physical, and emotional. That is why a 24/7 care team will become a critical need so that they can help you manage the complex interplay. Depending on how progressed things are at this stage, you may also need to add hospice or palliative care at this stage to help keep them as comfortable as possible. Typically, Hospice will visit twice a week for a few hours and hence needs to work in tandem and close alignment with your in-home 24/7 care team. In this way, you could supervise your parent’s health and focus on spending as much quality time with them at this stage as possible.
In the US, Alzheimer’s is the fifth leading causing of death for people aged 65 or older. It is prudent for you to help plan for financial affairs, cope with emergency medical decisions and be confident and prepared to make the right decisions on behalf of your parent.
With the progression of Alzheimer’s, your parent will struggle with memory loss. It is advisable for you to help them take care of their finances soon after their diagnosis. Please keep in mind that life expectancy after diagnosis will typically be 4-8 years. You can enable them to take part in making decisions especially at early-stage Alzheimer’s on topics where they want their money to be spent, or on whom and also taking charge of being their official caregiver or guardian. You can take help from any legal advisor or lawyer in writing a will or a medical/financial power of attorney.
With the progression of Alzheimer’s, your responsibilities and caring toward your parent increase and you may inadvertently fall under the trap of self neglection. Remember you will not be able to take care of your loved one unless you take care of yourself.
“It can be upsetting to be with a parent who raised you and you’ve known as robust and capable. To see them in the light of being dependent and incapable can bring up all kinds of feelings of grief”. (Tom Meuser)
Do not try to take everything in your hand or you will end up being exhausted and frustrated. Instead, ask for help from other family members and appoint professional helpers or caregivers, but be closely involved in supervising and helping them so a customized and high-quality care approach is executed. To preemptively avoid burnouts, frustration, or overwhelming conditions, we suggest you budget and plan time for:
Taking care of your parent’s Alzheimer’s and its progression is all about planning ahead to expect the progression across early/mild, mid to moderate, and severe or advanced stages, pacing yourself, and working closely with a professional caregiving team that can help guide you every step of the way to provide high quality and customized care.
“ There is a moral task of caregiving, and that involves just being there, being with that person and being committed.” (Dr. Arthur Kleinmean)
Do you live in the Dallas Fort Worth area? Care Mountain provides award-winning in-home care. We are a high-quality, highly experienced in-home care provider with 16 years of experience providing personalized care for 3,000+ DFW families. We have high-quality, experienced caregivers available with expertise in caring for your loved one’s care needs across hourly, 24-hour care, and live-in care. We have significant experience in supporting clients with Alzheimer’s across all stages of progression.