Survivor's Guide To Caring For a Loved One with Dementia

Just a fair warning, this is going to be raw and unfiltered.

I’ve been working with a number of patients (widows, soon-to-be widows or adult children) of individuals with Dementia. I’ve also had my own fair share of close family members who I myself have helped care for or have loved from the sideline. A few things I’ve learned clinically and personally - it’s messy, unforgiving, a long road, full of conflicting emotions that often times don’t sit right, confusing, devastating, and exhausting. It can be hard to navigate because of our medical and mental health systems in this country and also because dementia differs for each patient so there’s no one-size-fits-all approach. With the Baby Boomer generation coming of age, (there’s a lot of them), and advancements in medicine to keep folks alive longer, more and more of our parents and spouses will inevitably be given this chapter in their life. My hope is to provide some education and VALIDATION for caregivers and spouses through this difficult journey.

Dementia is a more global category that encompasses multiple types of memory/cognitive neuropsychological deficit disorders. It can be Alzheimer’s, Frontal Lobe prominent dementia (most notable for impulsive, inappropriate, aggressive behavior), Lewey Body (most notably known for the hallucinations associated with this type of dementia), Cerebrovascular Dementia (often a result of untreated diabetes, high BP, stroke, etc), alcohol related (Korsakoff’s), or Parkinson’s. Sometimes it’s too hard to diagnose the exact type of dementia because it’s too complex in presentation.

Protective Factors & Risk Factors

Extensive research, I’ll avoid making this a lit review (my grad school teachers are cringing right now…) have shown the following:

Protective Factors: Exercise, antioxidants, enough sleep, mental stimulation (i.e. puzzles, problem solving, critical thinking, imagination), learning new physical movements (i.e. think dance steps, new physical hobbies, using your less dominant hand to perform tasks, secret handshakes, CrossFit, Jazzercise, Zumba, or Orange Theory type exercises because it’s constantly varied). This is why -

Exercise literally creates more brain cells (particularly in the hippocampus; the part of the brain responsible for memory). New York Times did a piece on this. Doesn’t matter what kind of exercise, just get your blood and heart pumping.

Dementia, in part, can be a result of oxidative waste, toxins, and plaques built up from our environment and our lifestyle, so taking in antioxidants (nutrients from certain foods and liquids like healthy fats, veggies, and fruits) can help fight the oxidation that inevitably builds up in all of our bodies.

During the physical restorative stages of sleep (mainly Stages 3/4), theres a process that we call “brain scrubbing”. Essentially the cerebral spinal fluid is flushing out those toxins and waste earlier discussed out of our bodies. If we don’t get enough sleep, we’re not getting enough brain scrubbing. You need enough sleep time to achieve this process. The research conducted has shown correlations between chronic untreated insomnia and Dementia because of this process.

It’s a known fact; use it or lose it. Our brains thrive off of stimulation in order to maintain and build new brain cells (neurons). The best kind of stimulation is learning new material - whether from mental puzzles like Sudoko, crosswords, etc., or even better (newer research is favoring this) learning new physical movements because you’re not only taking new instruction in mentally, but your body is physically performing new movements.

Risk Factors: To name a few, family history of Alzheimer’s, stroke, diabetes, brain injuries (from sports, combat related), being overweight, untreated blood pressure, PTSD, and depression, severe alcohol and drug use, sedentary lifestyle, eating too many processed and unhealthy foods. Also, old age - our bodies are outliving our minds, so the older you get, the chances of developing some sort of dementia increases.

The Course

To start, the younger the age in developing dementia type symptoms, the faster the progression. This is called Early-Onset Dementia (under the age of 65).

The course is different for everybody in terms of how long the person will be suffering, what the symptoms look like, the mental and behavioral changes. I wish that I could give you a play by play, your medical team will try to give you a ridiculous pamphlet of the typical progression, but that’s not necessarily accurate, so take some assurance in knowing that it’s ok if you are witnessing a progression or pattern that doesn’t necessarily “fit” the “normal” course. There’s no normal.

However, things you’ll likely observe in the beginning could be things like slower processing speed, forgetting words, street names, short-term memory information (like what you had for dinner last night), or misplacing things. This gets tricky because these things are also a normal part of aging and also happen when we are anxious, depressed, or sleep deprived. I recommend if you have the means to get a baseline neuropsychological assessment of memory (no, that bullshit screener test is useless, so push for something more elaborate), especially if you have a family history or your loved one has cerebrovascular disease just so you can be in the know of any progression signs down the road.

The more progressive stages of Dementia can really vary depending on what type of dementia is going on. Some examples can be getting lost in familiar places, being more withdrawn, less talkative, more anxious around people (family or not), more impulsiveness, irritability or hostility or even violent (some types of Dementia only), repeating themselves during a single conversation, perseverating on old memories (long term memory often becomes stronger, no this is not an indication of Dementia per se, but it’s common), worsening short term memory, wanting to “go home”, or ask for deceased family members, forgetting how to initiate, engage, and/or follow through in a familiar task or activity (drive, shower, teeth brushing, cook a familiar recipe). From here, it progresses. This is when you as a spouse, child, or caregiver need to make sure you have enough family support, medical support, education, and guidance.

This is when you’re officially in it. There’s a thing called “Sundowning”. The best way I can put it is during the early evening, patients can become, just, “off”. They can become more confused, agitated, and irritable. This is a difficult time of day, so making sure some kind of familiar structure, an eye on them, and right medications (more on this later) are in order to make the difference in preventing or alleviating this state. Dementia patients get overwhelmed REALLY, REALLY easily. I will repeat this: Dementia patients get overwhelmed REALLY, REALLY easily. Honor them. This isn’t about you. This is about making them feel familiar and comfortable. However, people thrive while being around other people. It can be the best medicine. Do some research in your area to see if there are specialty communities that offer social activities in their facility for dementia patients. You may find a difference in their mood when you pick them up after they’ve had some socializing in a safe environment with their similar “tribe”.

You will observe moments of clarity from them, their old self, so to speak. Ive sat with my patients caring for their loved ones sharing with me that during the later part of the disease, it’s not uncommon for their loved ones to randomly make some pretty poignant statements to them (the expressions of love, remorse, regret, readiness to pass, etc) before quickly returning to their current demented state of mind. This state of lucidity goes away as fast as it comes. It’s all part of the course, but can be cherished.

Please take this in - this is harder on you than it is them. The one gift of dementia is that the person lives in the moment until that moment passes. So if your loved one is sad and confused one moment, this emotional state is transient, time to him or her is not the same as how we experience it. This sadness or confusion will pass and they will likely not have recollection of it. They also have happy and comforting states. Find creative ways to instill that into their present being. A specific family member of mine living with us loved car rides, being around cats, and listening to the piano organ. Show them photographs or family heirlooms from the past (if they are positive in association of course). They will remember these things and find joy and things to talk about in the moment. Embrace this for yourself, because they are embracing it in the moment they are feeling it. This course is a cruel battle, take in and run with the positives. This can be one of them. Allow yourself to have a sense of humor. When my other family member living with us began to try to answer the phone with the tv remote, I allowed myself to smile in the moment.

If using a walker or cane, your person may forget they need it. Even remembering that they are in a wheelchair. Be careful. I will also add to this - be observant and ask questions about any falls that may have occurred if they are living in a facility. This unfortunately happens, is not always communicated to family, and may be a sign that your loved one needs to be transferred to either a different facility or a higher level of care. Adult Protective Services can be your first contact if this is ever an issue. Sadly, it happens more than I’d like to observe.

You may notice things like showers, shaving, and teeth brushing will become challenging. This will be the bane of your existence. Your loved one is confused, scared, and ashamed that these daily activities no longer make sense to them. Let this provide you with some compassion and patience in assisting them.

Your loved one may not remember how to express themselves, particularly when they are physically or mentally uncomfortable. Look for other signs or ways they may be communicating to you or staff that could indicate they are in discomfort (squeezing your hand when you try to shave them, grabbing at your sleeve collar, not wanting to lie down, etc). Words can be lost in translation if they are trying to communicate something to you and only using the words they know in the moment. You’ll have to be creative in interpreting what they are trying to communicate. They are doing their best.

Confusion and fear can come in forms of anger and agitation towards you, so remember it’s not you, it’s them.

The middle stage of this disease lasts the longest. It feels like they aren’t getting worse, but it feels like a long course of emotional, mental, physical, financial strain. Because it is. One. Step. At. A. Time. Don’t forget to give yourself time to reboot. Self care needs to be one of your priorities. Consider joining a caregiver group for dementia patients.

Buy diapers. Be casual and try to give them as much perceived independence and power as you can. Imagine how frustrating and difficult this is for a person to lose their control, independence, power and freedom, especially if it’s giving it to their children or spouse. Especially men.

Having said that, consider starting to take over or watching accounts, passwords, and emails. Ive witnessed things becoming pretty complicated when accounts get changed and forgotten on the patient’s part and can make a lot of extra stress for you in the end.

Resentment, Exhaustion, and Frustration

The previous mention of the shower, shave, and teeth brushing struggle is real. This really will be the bane of your existence, as will the repeated conversations of them asking you the same questions repeatedly. As will the disagreements you will have with doctors, siblings, or other family members about proper care and work delegation.

You will feel frustrated, exhausted and even resentful during this process. It’s OK. This is incredibly difficult for you. You have so much going on in your own life with work, your kids, friends, your own health, your own marriage, etc., Caring for someone with Dementia takes an incredible amount of emotional, mental, and physical exertion, while also taking up a lot of your time and resources (financial, social, emotional, physical), and other life sacrifices. YOU ARE ALLOWED TO BE UPSET. Give yourself permission to fully acknowledge the “I love my father with all of my being AND Im so angry at him that this is something we have to go through together, and I didn’t even have that great of a relationship with him when I was younger!” You are not alone in thinking ANY of this. I’ll say it again - you are allowed to feel all of this. This is extremely difficult.

You don’t know what you’re walking into in any given moment. Your person can be in any emotional or cognitive state that they happen to be experiencing in that moment. They could have had a challenging morning or night’s sleep. Facilities, doctors, and other family members can have their own agendas and conflicting opinions. Your loved one can be on a very separate schedule than you and require needs that are inconvenient. You will lose sleep, you will lose your shit. Embrace all of this. Don’t fight it, because in the end, you need to roll with this cruel journey and save energy for where it’s needed. Again, this is incredibly difficult and cruel to witness. Be gentle and compassionate with yourself. You are allowed to be angry at this situation. You are allowed to be angry at this version of your loved one. This is not them, this is the disease. I’ll say it again - This is not them, this is the disease.

Medications

I want to make it clear not only for relevant medication decisions, but throughout ANY of this course in supporting and loving your person, empower yourself to stay true to your cultural, spiritual, and family virtues. If anything along the way, including my blog, doesn’t fit true to you, stay true to your course.

Having said that, medications can go a long way in preventing unnecessary struggles along the journey (preventing or decreasing anxiety, agitation, sleep issues, aggression). This too can be messy, because every patient differs in their response to certain meds (some medication side effects can do the OPPOSITE of what they’re intended to help with, i.e. cause MORE hallucinations, MORE confusion, MORE agitation. It’s ok, this happens, so try something else. Speak up and ask questions to your family doctor about other meds, there are a lot out there. Common ones are generally in the antipsychotic class, sometimes even antidepressants, or Benzodiazepines. Each family of drug however has it’s own potential serious side effects that you will weigh in on. Discuss this with your doctor and family and be cognizant of how your loved one responds to a particular drug. It can take a few trials, so keep that in mind.

There are medications out there meant to slow down the progression of the disease. We are still very early in the stages of figuring out this disease and it’s treatment, so please hold a realistic view on the effective of these meds. Studies currently show that the earlier you get your person on them, the more effective they can be in slowing down the illness progression. Ask around, not every physician is knowledgable in this scope.

During the much later stages, if you have chosen to establish your loved one’s care in a medical home, staff will push a bit on which medications are “necessary” at this stage of the disease in terms of what they will agree to administer to them. I strongly encourage you to advocate. If you feel your person’s quality of life can be a little better from taking that Vitamin D supplement the company won’t provide, PUSH.

The Decision

This is an extremely personal, spiritual, and financial decision - to keep your loved one home, to hire help to come to you, or to house them in a supportive medical home. Some places don’t even deserve this title, so do your research and don’t be afraid to transfer if you learn that the current facility isn’t a great match for your person. I recommend doing all three options in progression, if you have the means. When trying to work with siblings or other family members, I recommend saying “which days work best for you - Monday, Wednesday or Friday” as opposed to “hey when can you come by and take over for Mom?”. Be assertive. Yes, I know it can be a lot more tricky than that.

My rule of thumb is this - is your loved one receiving the proper medical and social care necessary in their current environment to keep them safe, thriving, and positive spirits? Keep in mind things like the medication administration, the physical labor, being knowledgable of the symptoms and behaviors indicative of the disease hiccups, falls, activities of daily living, the time required, the amount of social interaction they are able to have (again, people thrive being around other people), the dignity your parent or spouse may have wanted to keep intact with personal human ways of being separate from their family member. It is guaranteed that eventually, you will not be enough for their well being or care. This is a disease that takes a tribe to support, give yourself permission to allow for this to happen. You still have control, so use it. I also say this with the realism of the financial burden and strains that many families burden. This is incredibly difficult and frustrating.

You will find yourself with guilt in feeling these things through making these decisions. Remember, that this is about the person’s quality of medical and emotional well being. You cannot do this by yourself. They love their home, but, realistically, they may no longer be able to medically exist there and shorten their life unnecessarily or even hurt your two’s relationship if you prolong it. The guilt is extraordinary, nothing I can say to take this away from you sitting and honoring it. But please keep what Ive said in mind.

As the disease progresses cold, hard truth - you may find yourself thinking or wishing “just please pass, please move on”. Then, what proceeds may be immense amounts of guilt and shame for thinking this….Stop. You’re allowed to feel this way. This is a cruel, cruel disease that takes away your loved one’s capacities on all levels. It’s difficult for them and you. This places immense amounts of stress, sadness, and resources from your own life. This disease is a result of external reasons that we often cannot control. Again, this is not your loved one, this is the disease. You’re allowed to want this struggle to end for them (and you).

If you can beforehand, have a frank conversation with your loved one and relevant family members to discuss all the pros and cons associated with the different options that may be available to you.

Two Griefs

Another reason why this disease is so difficult is because of the two losses you inevitably experience from this - losing the person to the disease, and as if that wasn’t enough, then losing the person from their life living on this planet.

Some people can pinpoint when they realized their loved one was no longer “there”. It hits your heart like nothing else. That realization. The look in their eyes. You know what I mean if you’ve seen it. Their personality is SO different, you can’t converse with them, can’t include them in certain situations. At times you can’t recognize this person. They just aren’t there anymore. You can’t go to them like you used to. If you had a bad day, you just want your mom, need advice, to feel safe or look up to them, it’s not there anymore and there are no words for the grief you feel as a result. Allow yourself to cry when you can. You’ll be busy, but don’t forget to process this along the way. This is the first grief.

The second grief is when your loved one passes. I will leave out the details, because this is something you will honor and experience for yourself. Interaction, being present, being mobile, eating, and responding will notably shift for your loved one. They are approaching. You will get to the point of choosing hospice to join you in the last part of your journey. Hospice staff are a certain incredible. They can also differ in terms of their own (cultural?) ideas of what is best, in terms of feeding, which you may or may not agree with in terms of what may be prolonging life. Again, honor you, your family, your culture, and your religion. Don’t be afraid to speak up.

This is also when things can be very different for each person. But, what I will say is that you may notice a period of time when it feels very stagnant, no change, things are just… steady. It’s frustrating. Then, you may notice during this stagnation that they are choosing not to eat anymore. More plateau for a bit. Some clarity and lucidity. Then it happens - the fast decline. It happens faster than you thought.

Your loved one can hear you an can feel you.

It’s OK

You will likely experience ALL the emotions. Sadness, shock, RELIEF, gratitude, numbness. You will be busy making arrangements so you may not actually begin the second grief process until later. I want to emphasize this - When you feel relief, allow yourself to feel this. This does not touch how much you love the person and all that you meant to each other. Rather, this is a reflection of the incredibly arduous journey you and your loved one endured and no longer need to anymore. As I always say - allow yourself to feel every emotion that comes to you, take as much times as you need, and the only wrong way to grieve is to not grieve at all. Read my previous blog on grief to provide you with more support.

The last few years of their disease progression does not define their life. You may find yourself feeling like you’re stuck only with the most recent (and difficult) memories with that person. This can feel very difficult because it feels like it’s taken over all other aspects of who they were to you. I promise you this - as long as you allow yourself to remember all other pre-dementia memories, when you are able to acknowledge that this disease does NOT define who they were to you, others, or this world, the recent memories will become more distant and less prevalent. Over time, the memories from the past will resurface and become overarching. Trust this process. I really do mean it when I say take as much time as you need to grieve. Our society has such a stigma and unrealistic idea of what grief and loss look like. Honor it. Also honor you own life and walk forward with this person forever in your heart.

~ You’ve got this!