Dementia Caregiving- Loss Before Death

A diagnosis of dementia in a parent can feel like the beginning of the end. Many caregivers describe the day of diagnosis as the day that they truly lost their parent. It’s an isolating feeling, being with your parent while actively missing who they were.

The changes can highlight these losses. Caregivers are often struck by the sheer difference between their memories of their parent and the current reality. It is incredibly painful to watch a kind, loving person turn nasty during their sundowners and become vicious in their verbal attacks. It is differently painful to watch a strong, independent person become hesitant and withdrawn in their confusion.

The change in role can be difficult to navigate as a parent becomes dependent on their children for caregiving and decision making, and the caregiving child becomes tied down by their parent’s increasing dependence often after many years of living apart.

The issue of caregiving can break families apart as siblings either try to pass the buck to avoid the responsibility or each clamor to put their opinions in the ring and get the care decisions to go their way. As a caregiver, you may feel swamped by hearing from others what you “should” be doing from people who are not willing to lift a finger or send money to help.

All the while, you as the caregiver are navigating the day to day realities of providing care to someone with dementia. It’s not just an opinion to you, it’s your life and reality, and it can feel insulting for someone who isn’t in your situation to think they know better than you what you need to do.

At the same time, you are not just a caregiver. You are a person worth time off, breaks from caregiving, and your own separate life from your parent. There is such a pervasive myth that caregivers should be quietly dedicated to solely providing gentle care to a parent who calmly accepts our aid with gratitude. The reality is so different as you know.

Caregiving can last for years, and too many caregivers come to the end of their parent’s life resentful, burned out, lonely, and isolated. If the totality of your life has been given over to caregiving, you may reach the end of your time at a high risk for suicide.

It is vitally important that as a caregiver you stay connected to your community whether that means staying employed, keeping up with your needs, maintaining your hobbies, and nurturing your relationships. You are important in so many ways, not only for what you are doing for your parent, but in terms of your own intrinsic worth.

Dementia derails the entire family, but mostly the caregiving person. You are essentially losing your parent as you see the person they were giving way to the progression of the disease. You are at risk of losing yourself as well, as you are asked to do more and more for your parent. Family disagreement over the care process fuels the sense that things are breaking apart.

Caregiver support is so necessary. As a caregiver, it is important that you prioritize yourself through the process. Therapy is one possibility for support, and there are also so many groups available for you to get to meet with peers going through the same thing.

Grieving Body Changes

Whether from aging, medical treatment, or an accident, our bodies change. Like other forms of grief, the story we tell ourselves about how and why these changes happened is the source of our peace or distress.

Body changes are often our most public changes. When we start a new habit or learn a new language, others can’t tell just by looking. But the people around us take notice when chemotherapy leads to hair loss, an accident takes an arm, or aging makes us need glasses at work.

Medical treatments can cause some of the most extreme body changes. Treatments may cause us to gain or lose a significant amount of weight, we may lose a limb or an eye, we may lose our reproductive capability. Even when these treatments were medically necessary and we understand logically that this was the best path, we still grieve these losses.

Aging-related changes can be difficult to accept, particularly in cultures that value youth and appearance over age and wisdom. Even though we all know that we will age every year, some people fight hard against the reality of growing older.

Accidents are the most likely to result in complicated grief for the simple reason that they are not something we might choose (like medical treatment) or reasonably foresee (like aging). And accidents often have someone to blame, whether that’s yourself or someone else.

Blaming narratives lead us down a path of grief that is likely to keep us stuck in a vicious cycle of negativity. Blame helps us hold onto anger at the person or situation that caused our grief and keeps us away from taking productive action toward the present and future.

Grief that keeps us stuck in the past can be resolved through work around changing your story of what happened and why. Even when someone is clearly at fault, your narrative needs to incorporate the facts in a way that acknowledges what happened while still allowing you to accept your present reality so that you can continue to create your life moving forward. We need to balance our natural desire to know the reason for our suffering with the fact that there are some things we need to accept that we will never fully know.

As you notice the changes in your body, try to also notice the thoughts you have surrounding the changes. Notice if you are worried what others might think, if you are missing your ability to do a particular activity, or if you tend to blame someone in particular for your loss. This noticing allows you to begin to be aware of the narrative your mind has already created about the situation. These narratives are instinctively formed from your past experiences and your emotions. Notice with compassion and non-judgment, but also notice where your automatic narrative might be creating additional problems for you.

Once you’re aware of your narrative, you can work to shift it in a way that leads you to peace and mental freedom. Your reality is the same, but your thoughts and perspective can move from a focus on the past and what you lost toward acceptance of your current situation and a hopeful future.

When is Medicating Your Child a Good Idea?

It’s hard to know when medication is the right step for you and your child. This guide will walk you through the main issues to consider.

Mental health is a delicate balance of the holy trinity- biological, psychological, and social factors. Medication acts primarily on the biological side.

If only it were that simple. Mental health medication is still highly stigmatized. I’m sure we’ve all heard horror stories of the kid who was put on something that turned him into a blank zombie. Sure, he wasn’t bouncing off the walls anymore, but he also lost his personality.

On the other side, maybe you’ve seen the kid whose parents chose to give her only natural medicine for her ADHD. She’s completely unable to focus in class and she’s falling farther and farther behind grade level each year.

Or maybe you know a kid whose medication is helping him get through seventh grade. For the first time, he’s able to be present and participate in class. Too bad it couldn’t have happened earlier. His parents have been trying different meds and combinations since kindergarten. Between the nasty side effects and ineffective dosages, he’s been held back already, and he’s missed a lot of school.

Here are some guidelines I use when suggesting that medication might be the next step in mental health care:

  1. You’ve tried therapy. Therapy can be great. As a therapist, it’s my go-to solution. But therapy should show progress after a few months of consistent sessions with a person your kid has a good relationship with. This is why it’s important to set concrete goals with tangible benchmarks- so you’ll know if there’s change.
  2. Your child is not able to perform normal tasks of daily life without assistance at a level compared to other children of the same age. They should be able to follow a string of logical instructions- for example, asking your child to finish their bath, brush their teeth, change into pajamas, and then come tell you they’re done so you can read a story. If you need to remind your child of their tasks every few minutes, there’s a problem.
  3. They’re falling behind in school. This is the most important reason I recommend medication. Being held back affects a child’s self-esteem, their peer group, their reputation, and their sense of self-efficacy. It’s one of the most damaging and devastating experiences at that age. Many of my adult clients who have been held back listed it as a pivotal event, even as young as kindergarten.
  4. They are isolated from friends. Kids who have dramatic outbursts from ADHD, bipolar, psychosis, and other disorders tend to attract labels, and not very nice ones. This keeps them from normal social activities with peers and may make them a target for bullying- or turn them into a bully if loneliness shifts to anger.
  5. They recognize there’s a problem and want a solution. Lots of kids I’ve talked to over the years have told me they want to be able to sit down and concentrate on their work but they just can’t. This is the big difference between the class clown’s acting out and the disruptions from a mental disorder. Most children don’t want to interrupt, do poorly, or fail classes. When there’s a problem, they know.

Medication isn’t all-or-nothing. It’s possible to give your child a dosage that will take them through the school day and wear off in the evening. Many kids take medication holidays when school isn’t in session. Some kids need the additional help so they are able to try therapy and are able to stop the medication once things are under control.

But advice from the internet can only be vague. I don’t know your child or your situation. The best way to find out how medication could work for your family is to talk to someone in person.

The first person I always suggest is your pediatrician because they know your child and they know about normal child development. Doctors aren’t as well trained in mental health as a therapist or psychologist, but they can diagnose and prescribe psychiatric medication. You can ask during your child’s routine appointments, and this is usually covered by insurance.

The next person to talk to is your school’s psychologist, if your child qualifies for services through a 504 or IEP. These services are usually free through the district. Although the school psychologist won’t prescribe medication, they can assess your child, describe the diagnosis, and discuss the possibility of medicating.

The last person I recommend is a psychiatrist. This is because most communities have very few psychiatrists, so it can take months to get an initial appointment, if you can get one at all and aren’t placed on a waiting list. When you get there, the psychiatrist likely doesn’t know you or your child, so you have to explain the history of the problem. And if there are any issues with the dosage or side effects, it can be a while before you can get in for a follow up appointment.

You can talk to your regular therapist about medication too. Therapists in California are trained in psychopharmacology- knowledge of medications for mental health issues. But therapists can’t prescribe medication or even suggest medication. They’re available for you to talk about your thoughts or feelings about medicating your child, and they can help you find local referrals for doctors, psychologists, or psychiatrists.

IEP 102: At the IEP

Confused by your rights as a parent when it comes to IEPs and assessments? This series will guide you through the process.

Disclaimer!

Every school does their IEP meetings differently, so this won’t exactly apply to every situation out there. You’ll have to modify this information to suit your unique needs. But if you’re already involved in the IEP process, you’re probably pretty good at dealing with modifications.

A quick note: I’m based in California. I’ve worked in schools in the Silicon Valley area and in the Monterey Bay and have experience with their systems. The information here will probably be most helpful to parents in the area, pretty helpful to parents in other parts of California, and only somewhat useful to parents in other states. Why? Because every state has their own ed code. Also, I am not a lawyer, and my experience with California IEPs is not meant to replace legal advice. My interpretations of the law should not be taken as absolute truth.

Okay, that’s the boilerplate out of the way. This text will appear at the top of every post in the IEP series, so on future posts, you can just scroll past because you’ve already read our disclaimer!

At the IEP

IEP meetings tend to be difficult for parents, teachers, and administration. It can be a long process to get the district to approve an IEP meeting in the first place, and that tension can carry over. For the teachers, having one student (or several) who need extra services that they are not receiving is similarly frustrating.

With emotions potentially running high and your child’s educational future at stake, here are seven tips to make sure the IEP meeting goes well.

  1. Keep copies of all documentation. The school will always keep copies for you in the child’s cum file, but they are not always accessible to you during off hours and over school breaks. Some schools keep them on site and others keep them at the district office. You should have your own copies of everything. Ideally, you should get all the information before the meeting so you can go over it yourself. Bring any outside documentation you have too- and a copy for the school.
  2. Avoid charged language. No matter how stressful things get in the room, don’t let anger or disappointment color your tone or words. Unfortunately, some parents get labeled by school staff as being overly emotional or difficult to work with. The teachers and staff go into those meetings already discounting those parents.
  3. Stick to facts. You have all the reports and assessments to back you up. Whatever you say will sound stronger if you reference the documentation. Printed emails, SST and 504 paperwork, and historical evidence from past years are also great ways to demonstrate need.
  4. Focus on the need. If your child needs a one-on-one aide, keep the conversation focused there. You can use the present level of educational performance report, the school psychologist’s assessment, communication with the teacher, or administrative reports to demonstrate that the accommodation will meet your child’s needs.
  5. Be willing to try. If there is disagreement on the best service for your child, suggest trying one service for a period of time and agree to meet again later to see how that service is working for your child. Make sure you’re getting updates regularly.
  6. Set tangible, measurable benchmarks to evaluate success. This is how you can demonstrate that the services are working (or not working). Use the assessments to guide the benchmarks. If scores are low, the accommodations should support a rise in scores. If disruptive outbursts are the problem, accommodations should help the number of outbursts per week decrease.
  7. Schedule a time to decompress after. Once you’re alone in your car, say what you really think of the teacher who “tried everything” but clearly didn’t try anything you suggested. Practice self care with a coffee and pastry before you go home. Go to a nice trail and have a hike. Whatever helps you process the meeting best.

Remember, you don’t have to be there alone. You have the right to bring a friend, translator, outside expert, or partner to the meeting. You also don’t have to accept the IEP right away. You can take it home to consider it first. You can also accept parts but not all of the IEP. You can also reject the IEP entirely. Make sure that your signature of attendance can’t be used as a signature of acceptance. You can write “proof of attendance only” across or immediately under your signature so it can’t be cropped out. If the meeting went particularly poorly, ask for another meeting. You can ask for a meeting as often as you’d like.

IEP 101: Getting to the IEP

Confused by your rights as a parent when it comes to IEPs and assessments? This series will guide you through the process.

Disclaimer!

Every school does their IEP meetings differently, so this won’t exactly apply to every situation out there. You’ll have to modify this information to suit your unique needs. But if you’re already involved in the IEP process, you’re probably pretty good at dealing with modifications.

A quick note: I am based in California. I’ve worked in schools in the Silicon Valley area and the Monterey Bay and have experience with their systems. The information here will probably be most helpful to parents in the area, pretty helpful to parents in other parts of California, and only somewhat useful to parents in other states. Why? Because every state has their own ed code. Also, I am not a lawyer and my experience with California IEPs is not meant to replace legal advice. My interpretations of the law should not be taken as absolute truth.

Okay, that’s the boilerplate out of the way. This text will appear at the top of every post in the IEP series, so on future posts, you can just scroll past because you’ve already read our disclaimer!

Getting to the IEP

There are a few different ways your child might be referred to an IEP meeting. The schools are supposed to be the ones who find that a child needs additional accommodations in order to get an education. But let’s be real. The district has a few thousand students, each school administration has a few hundred, and each teacher has about thirty. It’s possible your child might fall through the cracks or be misdiagnosed as “trouble” or “aggressive” or “just shy.” Some disabilities are obvious, but many are not apparent to someone who doesn’t know your child.

Notice my language. I said disability on purpose. During an IEP it’s important to stress your child’s deficiencies and needs. This seems backwards because most of us approach parenting from a strengths-based orientation that focuses on the child’s abilities. The IEP is a time where you need to focus on the areas where your child needs support. You need to demonstrate that they are falling behind, not meeting benchmarks, or unable to keep up.

So how do you request an IEP? Each “special education local plan area” creates its own policy. Your school should be able to get you a copy of your policy, but many schools will refer you to the district office. Most schools are fairly cooperative, but some will try to keep you from the information. If your school is difficult at this stage, that’s a sign you might need a lawyer at some point during the process.

For bilingual children, it is important to note that the assessment should be conducted in their “native language,” so be specific and accurate on school forms where it asks about the student’s other languages spoken at home and their level of fluency. The assessor should use “the language and form most likely to yield accurate information on what the pupil knows and can do.”

After your child is referred for assessment, the school has 15 days to give you the proposed assessment plan. The plan should be in your preferred language using terminology you can understand. It will explain all the assessments that will be used. If you do not consent to the assessment, the school has the right to assess anyway, though they are not able to implement an IEP without your consent.

You should be called into a meeting within 60 days of signing the consent for the assessment (sometimes called the evaluation). The school will assess the student and use those findings to inform the IEP meeting goals. Some districts will accept information from an outside assessment, but many will not.

The ed code states that the student will only be moved to special education when they are unable to work in general education. If you know your child needs special education, this process can be slow and frustrating while your child falls farther and farther behind with insufficient accommodations in the general classroom. If you think your child needs additional help but could stay in the general education system, it can seem like the school is funneling students straight into special education without fully exploring the general education classroom options.

Look out for IEP 102: At the IEP here!