Posts tagged ‘down syndrome’

June 18, 2019

Five Ways to Cope When Life Feels Like it’s Always About Someone Else

Here are five ways to cope when life feels like it’s always about someone else. If you are an attentive, involved caregiver you know how difficult it can be to prioritize yourself. There’s often no time and energy remaining once you’ve taken care of feeding, bathing, dressing, medications, recreation, transportation and cleaning required to provide for an ill or disabled relative. On top of that, you may be responsible for paying bills and taking care of other children. You may also have a job.

I feel overwhelmed just typing that list. And I feel tired this morning in spite of 9 hours of sleep. Yesterday, I kept my medically fragile granddaughter who had been throwing up everything, including meds, for two days. It is a draining experience. And that’s the reason I offered to keep her. Her parents and brother needed a break!
sleep
For those of you who have never been a caregiver, it’s easy to assume that being organized, prepared, and energetic will be sufficient to handle the job without undue strain. It helps. Having sufficient financial resources along with family and social support lessen the impact. But until you’ve done the job, there’s no way to understand the toll it can take.

Data say a large majority of caregivers report adverse effects to daily routines of sleep, eating, and exercise. They also report a significant negative impact on social and recreational life. A majority also report often neglecting their own health during caregiving. Even if you view caregiving as rewarding, this eventually affects your quality of life.

I recently ran into a nurse who works in the hospital unit my granddaughter frequents. She told me how much she LOVES my family. She’s so impressed that my son & daughter-in-law still have jobs and lives. She said that most parents with similar children quit their jobs.

Of course that’s an anecdotal assessment, but it’s telling. At a certain level, caregiving can require you to limit your hours, change the level of job you hold, or stop working altogether. That not only affects income, it can lessen your social connections.

Nurture Supportive Friendships

When I look back at the years I owned my previous business, I see lots of inclusion in birthday drinks, holiday parties, family weddings, and funeral visitations. I also see how much effort I put into maintaining the connections that led to that inclusion. Once I had less time to “market” myself, many of those invitations ceased.

The following year when circumstances demanded I begin caregiving, an additional level of friends fell away. Now, I have a core group of friends who understand that I must often say no. They don’t take it personally. They endure my initial nonstop talking the days I haven’t spoken to anyone besides children in weeks. They are patient when nothing seems funny to me.

I am grateful for these friends. I’ve known most of them for more than 15 years. Some I’ve known for 30. If I had not already had an established set of friends, it would have taken a great deal of deliberate effort to cultivate them once caregiving began.

Allow Yourself to Receive

One of the best ways to cope when all of the focus in your household is on someone else, is to allow yourself to receive. Of course, that requires someone to give. It is often friends who are willing to lend a hand with cooking, shopping, or other errand running. Don’t hesitate to ask or to say yes when they offer.

If offers of help aren’t sincere, you’ll learn that quickly. You’ll also learn that many are. I recently had a friend research the availability of Quick Dams online while I wet vacuumed water from my flooding office building. That was one less task I had to do that night.

Hire a Service

When friends run shorter than finances, a service can help with care. After my mother suffered a stroke and no longer met the criteria for rehab, my stepfather took her home. He had been very impatient with the staff at rehab and frequently let them (and us) know that believed he could do a better job of caring for her, keeping her bed clean, and getting her to eat than they had.

My sister and I arrived at the end of her first week home. One look and it was clear that NewDaddy could not handle another day without assistance. He had grossly underestimated the care required to deal with her impairment.My sister and I lived hours away, so I hired a service that would do household chores, dispense meds, and eventually provide hospice care.

The emotional drain of caregiving can be exhausting. The roller coaster of hospitalization, code blue, ventilator, return to baseline, stable period, minor illness, rapid decline, and hospitalization in the medically fragile is traumatic for both patient and family. It becomes difficult to relax and renew between medical events because the natural reflex is to remain braced for the next escalation. Often the stable period does not last long enough to process through the most recent past trauma making the effects cumulative.
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Make Time for Grieving

With dementia, stroke, traumatic brain injury, down syndrome or cerebral palsy comes a sense of loss that must be grieved. Grief requires stillness which requires time away from tasks including those of self-care like cooking. Unfortunately, church groups, civic clubs, book clubs, and informal groups of friends who happily provide meals and household support when someone dies do not recognize the prolonged grief of slow decline with the same kind of assistance.

Healthy caregivers may set good boundaries, make sure to add an hour of sleep or a nap, eat well, and continue to work out and still end up hitting the wall. It happened to me in 2018 and it came as a shock. I have always been able to work long and hard and still find the energy to play. I had no idea how much energy it takes process grief and trauma.

When you begin to notice life is never about you, it may feel selfish to sleep an additional two hours per night. It can also make you feel old, unfun, and unattractive. But catching up may not be a matter of sleeping-in one weekend. It can take months of added sleep to get ahead when you’re a caregiver.

Change What You Can

I now begin to say no much sooner–before I get too tired. I pay more attention to subtle body signals. And I work less. Since I am my own boss, my work schedule is something I can change.

While maintaining connections is important, I no longer choose to give my time to people who make things more difficult. I feel much less distress over the relationship shifts this causes than I do accommodating friends and relatives who regularly create interactions that are convoluted, vague, chaotic, argumentative, unnecessarily complicated, manipulative, inconsiderate or filled with turmoil. Any offer of “help” from these parties is not helpful and therefore declined. Ditto for those who have proven repeatedly unreliable.

Finding the time, resources, and energy to plan an actual vacation has been difficult the past couple of years. I’ve made plenty of trips, but they haven’t exactly included recreation and relaxation. I can reframe how I view days off and vacations and I can certainly give up feeling bad about relaxing when my to-do list remains long.

The Sum Total is Self-Kindness

Big change begins with small changes. When you deliberately practice self-kindness it eventually becomes habit. And practicing self-kindness is really the best way I can think of to cope with any difficulty in life!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2791523/?ncid=edlinkushpmg00000313

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5453737/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5453737/table/TAB2/?report=objectonly

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4924075/

http://www.cooking2thrive.com/blog/least-feel-like-party-need-one/

http://www.cooking2thrive.com/blog/id-tell-you-but-then-id-have-to/

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January 8, 2019

I’d Tell You, But Then I’d Have To…

I’d tell you, but then I’d have to…quit talking because you’d have tuned me out anyway! And you thought I’d have to kill you. No, you’re safe. This year, I really want to map out some expectations for the healing process. I feel like that’s a missing piece of the puzzle for many of us.

But that map will not start today. Why? Because life has handed me other priorities. I know you’re familiar. In random waves of difficulty, life can interfere with the best of intentions sapping your energy for anything other than the essential.
meds
The virus I had on Christmas lasted a good 14 days. Two days later, my medically fragile granddaughter came to stay with me while her parents travel out of state. She is sick. Her cough sounds like she has the same virus I had.

In the average baby this would not be of great concern, but this 8-month-old has spent 50 of the past 128 days in CVICU (Cardiovascular Intensive Care Unit). The last cold she got put her in the hospital so oxygen dependent that when the oxygen supply accidentally became disconnected, she coded. That’s short for they called a code blue meaning she required immediate resuscitation.

Em has a paralyzed vocal cord and has not even attempted a bottle since August. She hasn’t successfully eaten more than half an ounce from a bottle since she was 6-weeks-old. She isn’t comfortable with swallowing. That means the only way she has figured out to get rid of the drainage down her throat is to throw up.

Again, not that big a deal…except she often starts coughing during a feed and then throws up to clear her throat. (During a feed – that’s how you start to talk when you spend lots of time in a hospital.) We fill her tummy through a button attached to a gastrostomy tube (G-tube). Three times a day, we add medications to her food. If she doesn’t get enough diuretics, her lungs fill with fluid so keeping the meds down is essential.
gtube
This is my main priority – keeping meds in her. Second is monitoring her pulse ox. I’ve had to keep her on oxygen the past few days. That means lots of logistical maneuvering and plastic tubing snaking through the kitchen into the living room, dining room, and bedroom. I move the oxygen concentrator in the morning and evening, but I don’t want to have to move it all day long.

Now, you’re probably either thinking, “bless your heart, I can’t even imagine” or “yeah, that sounds awful, but you’ll get through it and everything will be better”. Either way, I’m sure you’re ready to tune out unless I get to the point.

pumpWait…I haven’t even told you how long it takes to measure out 1.6, 1.875, and 5.625 mls of 9 different medications. I haven’t explained that her thyroid medication comes in 2 different pills. Depending on the day, I have to choose a 25mcg pill or cut a 75mcg pill in half, crush the pill, add water, place the resulting mixture in a slip tip (yes, that’s really what it’s called) syringe and inject it into the button. I haven’t mentioned any of the almost daily issues with equipment – a tube that slips off the feeding syringe and soaks me during a feed; the feed pump we use at night reading NO FLOW OUT even though there’s no obstruction and I can prime out liquid; an auxiliary port on a tube that gets caught, comes open and dumps meds and milk in the crib; the pulse ox sensor that has too much ambient light to work, etc. I haven’t told you that Em has panic attacks during which she starts gulping air. That means she needs constant burping through the burp tube, but she also needs to be held close to calm down. Those can’t be done by one person at the same time. Oh, and Em can’t sit up on her own yet. She has Down Syndrome and has spent so much time in the hospital she is way behind. Because she weighs 17 lbs, that adds another level of difficulty. Yeah, I know blah, blah, blah.

But that is the point. To feel like you understand what my days really look like, I need to tell you even more details. When I do, 98% of people stop listening. I can visibly see it happen. Some people want me to buck up. Others just don’t want to think about it. Others wish I’d say something interesting for a change. Many stop me by saying something they mean to be comforting, but often reflects that they haven’t absorbed what I said.

I am lucky. For me, the relentlessness of caring for a child who can go from okay to critical in 24 hours is a temporary situation. For my son and daughter-in-law, it is every day on top of jobs and caring for a two-year-old. When Em’s in the hospital, one of them has to stay there with her.

Not only do they have the stress of the routine, they have to make some really tough decisions. Em has pulmonary hypertension. There are 12 cardiologists who consult on her case and they fall into two different camps on treatment. Half of them would have her living in the hospital right now. How do you decide whether to bring her home or keep her hospitalized when the experts can’t reach a consensus?

And to all of you who want to say, you’ll get through this and everything will be okay – yes, we’ll get through it and it will be okay, but we do not know whether her health will improve. It may not. Getting our minds around the fact that this may be our new normal is more than any of us have been able to do. It just feels too sad. And that’s when it’s not feeling too overwhelming.

When you’re up from 2am to 3am with the average baby it’s tiring, but you’re buoyed by memories of holding your baby close or hearing her laugh. When you’re up from 2am to 3am with a medically fragile baby who is sick, you worry that you didn’t spend enough time holding her because you were too busy performing the tasks that keep her alive. That is a lonely, emotionally exhausting 2am.

I think we all just want to know we’re not alone with this. We want to feel a sense of support and connectedness in this situation life has dealt us. There’s simply no way to feel that if we don’t feel seen and understood. I don’t say that just for me or my family. We are just an example. It applies to all of us. It is the real gift we want from each other.

As humans, we may be geared to need connection, but somehow at this moment in time we seem to be lacking the will to stay tuned in when things are hard to hear. That means those who most need support are least likely to get it. I don’t know if that’s why we have so many people who feel the need to escape through drug and alcohol use, but I think it may be related.

Speaking from your heart is a vulnerable experience. Listening with your heart sometimes feels even more so. When you really see people, it changes your perception and not just of others, but of yourself. Keeping your heart open requires strong boundaries and oceans of courage. This is the real work of a full life. And many of us miss out.

Em and I saw a beautiful example of connection this week. I flipped on the Ellen show during a feed. Dax Shephard was on and it was his birthday. During a segment called, “Ask Dr. Dax,” his wife Kristen Bell asked from the audience what he would recommend giving someone special like a spouse for their birthday. He answered, “I would say please, please, please give that person love and support for 11 years, give them two beautiful baby girls…and you’re good.” Kristen’s eyes filled with tears, as did his. It was a beautiful thing to see.

Not everyone has a spouse, partner, parent, or child with whom such a connection is available. Today, you may have the privilege of being the only person who can offer active listening to someone you encounter. You may be the one person who can hold the space for someone to heal. It may not be instinctive or easy. It may interrupt your busy life. You may not feel appreciated in the moment. In spite of this, should you choose to listen, you give a valuable gift when you find the courage to stay tuned in.

If you have made it this far, thank you for listening.

https://pedsurg.ucsf.edu/conditions–procedures/gastrostomy-tubes.aspx

https://www.mayoclinic.org/diseases-conditions/down-syndrome/symptoms-causes/syc-20355977

https://www.cdc.gov/ncbddd/heartdefects/coarctationofaorta.html

https://www.mayoclinic.org/diseases-conditions/atrioventricular-canal-defect/symptoms-causes/syc-20361492

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4070778/

https://www.psychologytoday.com/us/blog/emotional-nourishment/201612/why-we-need-each-other

https://armchairexpertpod.com/

https://www.youtube.com/watch?v=2cF-PXWt_bQ

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

May 16, 2018

Feeding An Infant With Down Syndrome Can Require Tough Choices

Feeding an infant with Down Syndrome can require tough choices. I’m writing this post between trips to the hospital to see my new granddaughter, EM, and taking care of her 22-month-old brother, DJ. EM was born on April 24 and had her first heart surgery May 1. She’s currently living in CVICU trying to learn to eat from a bottle while struggling with oxygen levels and respiratory rates the doctors can’t quite regulate. Alongside the significant medical events, the fact that she has Down Syndrome feels somewhat like an afterthought.
room
There’s so much equipment, so much beeping, and such a high level of activity in EM’s room, it’s impossible to simulate the typical newborn experience. Soft soothing sounds, cuddling, and nursing are often limited, sometimes impossible. Everything is geared toward surviving.

Critical to survival outside the hospital is EM’s ability to take in nutrition. Right now she is being fed breast milk through a feeding tube. Twice a day, she attempts to nurse from a bottle. We’re lucky. Her sucking instinct is still strong, but a side effect of the surgery was damage to her vocal cords and now she cannot swallow breast milk. She needs something thicker.
feeding
If you’re interested in healthy eating, good nutrition, and real food, you probably agree with the American Academy of Pediatrics that breast milk is superior in providing nutrients for rapidly developing bodies and minds. A child with Down Syndrome already has some obstacles, so superior nutrition seems especially important for EM.

The problem is, how do you prioritize getting breast milk and being able to swallow? It seems like the intuitive idea is to thicken breast milk with some natural substance. You’ll find this idea promoted on plenty of websites.

As it turns out, thickening breast milk safely and effectively isn’t as easy as it sounds and our doctor doesn’t feel comfortable with any of the thickeners available on the market. There’s a lack of data showing gel and gum thickeners are safe for use in infants. At least one of these products has been associated with necrotizing enterocolitis, a bacterial infection of the intestine which can cause death of intestinal tissue possibly leading to blood poisoning (1).

Some web forums will recommend thickening breast milk with rice cereal or oatmeal. This may work for feeding through a G tube (feeding tube), but is impractical for nipple feeding in an infant with difficulty swallowing. The enzymes in the breast milk quickly break down the cereal. These infants eat slowly. The purpose of using cereal to thicken is defeated soon after a feeding begins.

What that means for babies like EM, is they must rely on formula thickened with rice cereal or oatmeal. Our occupational therapists use rice. They conducted a swallow study through which they determined the consistency of nectar is EM’s best option. I have no idea how to describe the consistency of nectar, but they’ve converted that to mathematical ratios so we’ll know how to create it.

If you have a baby with Down Syndrome and difficulty swallowing, you may have some difficult decisions to make. Will you switch to thickened formula and supplement with a few drops of breast milk each day to provide antibodies while working toward the possibility of breast milk alone? Will you give up pumping and switch to thickened formula until you can begin solids? Will you thicken with rice cereal or oatmeal? Will you try to stay in the hospital longer to see if feeding can progress or will you accept a G tube and/or portable oxygen to go home sooner?

It’s a tough spot to be in. All you want is to provide the best possible nourishment for your child so he/she can develop and you can’t use the most nutritional food available because the baby can’t swallow it. And there are other considerations.

Research has shown a higher incidence of Celiac Disease in patients with Down Syndrome than in the general population — possibly as high as 18.6% as compared to 1%. Currently, the US does not screen infants with Down Syndrome for Celiac Disease, and thickening formula with oatmeal could be harmful to a baby with undiagnosed celiac disease.
formula
The issues don’t end there. Rice cereal may contain arsenic. Some brands of formula have ingredients like soy or gums including carrageenan which is banned from infant formula in Europe per recommendations from the World Health Organization and the United Nations.

With my children, I was adamant about only feeding breast milk for the first 6 months and then introducing foods one at a time. I felt really strongly about it. As it turned out, this process helped us quickly determine that each of them had an allergy to cow’s milk. My middle grandson shares this allergy. None have suffered ill effects at length.

This is often not the case. Many children endure sneezing, coughing, congestion, swelling, nausea, vomiting, dizziness, tummy pain, rashes, or diarrhea for months or years due to food sensitivities. It can be difficult to pin down the culprit.

Of course we don’t want any of these complications for an already vulnerable infant, but we have to keep things in perspective. If a baby has congenital aortic valve stenosis, immediate surgery may be required. Although surgery will interrupt feeding, it will only be recommended in order to save the baby’s life. If that surgery leads to extra difficulty with bottles if is unfortunate, but choosing feeding over surgery makes no sense.

Babies with other common heart defects associated with Down Syndrome will tire easily when nursing and may have to be fed more frequently. Some of these babies will have surgery when they’re a few months old. This can help endurance, but may detrimentally affect swallowing. Still, surgery is a better option than the extreme fatigue experienced without it.

Not every baby born with Down Syndrome will need heart surgery, but most will have less neck and muscle control than other babies. They may also have a thicker tongue. This combination can make eating difficult. Breastfeeding may be possible although proper latching may take some time and patience.

Bottle feeding poses similar latching problems, but has the advantage of a variety of nipple options and the possibility of dispensing thickened formula if your baby tends to aspirate breast milk. A swallow study may be needed to determine the best solution.

The overall goal has to be getting nutrition into the baby’s system. If we do not accomplish that, it doesn’t matter what we’re feeding. When EM can finish a tiny 10 ml bottle, it feels like such a triumph that it’s hard to be upset by the fact that there’s formula and rice cereal in it.

Sometimes reasonable, healthy goals don’t line up with available options. This can be frustrating and difficult to accept, especially if we’re planners. Remaining a flexible advocate for your baby when presented with difficult choices requires courage, character, and grace. It is not easy, but it is important.

1)https://well.blogs.nytimes.com/2013/02/04/warning-too-late-for-some-babies/

https://medical-dictionary.thefreedictionary.com/necrotizing+enterocolitis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5535317/

https://www.ncbi.nlm.nih.gov/books/NBK52687/

https://www.ndss.org/resources/the-heart-down-syndrome/