caregivers and chronic illness, chronic illness, Dealing with Grief/ loss in PD, parkinson's awareness month, parkinson's disease

Dealing with end stage Parkinson’s disease- the long goodbye: By Dr. De Leon

“..Before the prospect of living less than everyone else, I have decided to live faster, more fully…” Alexander Dumas – la dame aux Camilles

 

Lately, I have been thinking about this subject quite a bit especially since one of my dearest friends has been diagnosed with terminal disease. For the first time this in my life, I have found myself to be at a loss for words. This is saying a lot for aside from being a physician who has delivered bad news a thousands of times, I have also cared for many loved ones with terminal illness. I think the reason I am having such inner turmoil is because she is my own age with a child who is my daughter’s age aside from being one of my best friends. I am not ready to let go. Especially since only two weeks prior to her diagnosis we had made so many wonderful plans. Of course visiting her at MD Anderson also conjured up a whole host of emotions. The smell and place reminded me of my first patient in this same hospital I had to pronounce dead in front of her family while I was an intern. What made it so difficult at the time was the fact that not only was she Hispanic but died of melanoma which runs in my family plus she was my very own age at the time 26.  My heart breaks even now remembering her and then thinking of my friend.

This situation made me think of everyone dealing with family members and patients themselves who are terminal. How do we deal with them? What do we say? How do we treat them?Image result for image of terminal illness

As far as Parkinson’s is concerned not much literature is available on the subject as some of you have inquired from me recently.

I decided to write some points on the subject. Although Parkinson’s is no longer considered a terminal illness as it was once 30 years ago. The new advents in treatments have greatly improved our quality of life yet; in many parts of the world where medicines are harder to come by it may still be considered a death sentence. Nevertheless, in most cases PD is a long goodbye. Subsequently, we are forced to learn to “live with death” in our lives for an extended period of time. Thus, the ways we deal with death and terminal illness in our society have changed dramatically since a great deal of people live with chronic progressive neurodegenerative illnesses. Unlike the cases when patient died suddenly – the patient him or herself also have to learn to grieve while still alive and fighting to hold on. This can cause a lot of stress in the family particularly because grief is a family matter.

Dealing with our own loss can be difficult enough as I am finding out. Moreover, thinking on how to comfort those experiencing grief first hand can be that much more daunting.

First, for the caregiver.

You might be experiencing trepidation in how to proceed with the relationship once a loved one has entered the end of stage of the disease. Try to remember that your loved one is still the same person even when they have dementia and can no longer communicate. Underneath they still are the ones you love. If they are still lucid try to focus your relationship on one another rather than on the disease. Don’t focus on unsolved issues. Focusing or bringing up these to light is not going to help the relationship any rather make it more challenging. Don’t underestimate the power of your presence. But never try to be a counselor. Be a listener only.

Secondly, the other thing I learned through the years but especially while taking care of my dad. Dyeing is NOT a science. There is no time frame nor right or wrong way to die. I so wanted my dad to talk about his life, what he liked and did not like. Plus wanted any advice, pearls of wisdom he could share with me; but he never could do this for me. I suppose it was too painful for him to express and I too incentive to his feelings being selfish wanting to know more about his life before he passed.

When it comes to dying, some people accept it and come to terms while others may choose to live in denial. Allow them the freedom to choose. Plus denial is a natural self-preservation mechanism because the alternative is too frightening to cope with. As long as the denial is not causing harm it should not be contested. They might be afraid of letting family down, losing control of independence, bodily function etc. Offer spiritual support but as I found out with my loved ones sometimes it is easier for them to seek support outside of the family. Offer to have spiritual counselors come by regularly like ministers, priest etc. My grandma really enjoyed this time even my dad to a certain degree especially when other congregational members came to sing.

Should we keep vigil by their side when time draws near? Get your cues from your loved one. Ask what their desires are. Being near a loved one as they are dying although painful can be a very beautiful sacred experience increasing your inner strength, even though at the time you may feel helpless and powerless. It also allows you to give your loved one permission to die if you sense resistance on their part because something seems to be holding them back. For instance, when my dad was in his last breaths (agonal state) I could sense his hesitation to let go because he was worried about mom. I told him it was ‘ok’ to let go. I emphasized the fact that we loved him very much and would see him soon and that mom was going to be fine with us. He passed away that evening.

But keeping vigil can be emotionally and physically exhausting.

Remember to take care of yourself as well. Take breaks and don’t forget to eat and drink fluids. You don’t want to end up in hospital yourself. You may choose to have love one die at home, hospital, hospice or nursing home. You and loved one should decide ahead of time. Both my dad and grandma wanted to die at home.

Third, is ok to allow yourself to grieve which usually comes in waves of emotions. Sometimes you may start grieving as soon as the end draws near other times may not occur till much later after their passing.

Guilt is a normal real part of grieving. I also experienced feelings of guilt after my grandmother’s passing, questioning if I had done enough. I would second guess my decisions wondering if she might have lived longer if I had kept her under my care the last couple of weeks. Remember that these feelings too shall pass. If the grief or the guilt is not seeming to go away make sure you avail yourself of a professional grief expert to help you heal.

So my advice is:

  • Laugh often
  • Really listen
  • Try to keep life as normal as possible
  • Provide genuine support
  • Make a wish list
  • Help maintain their dignity
  • Provide physical contact as much as possible
  • ask for specific needs which might require assistance

#Unite for Parkinson’s this coming month of April!pdftulip

 

sources:

http://www.nhs.uk/Planners/end-of-life-care/Pages/coping-with-a-terminal-illness.aspx

http://www.hospicenet.org/html/help_yourself.html

caregivers and chronic illness, Parkinson's awereness, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health

Parkinson’s disease and The Work Place: By Dr. De Leon

lucile ball

This is a classic picture of one of my all time favorite comediennes with a well known skit. Every time life comes at us fast, this is what I am reminded of.  Sometimes no matter how hard we try, we have to swallow some of the stuff coming our way in order to keep moving forward. As I have been having more recent medical complications due to my Parkinson’s disease and medication side effects, I again was reminded of Lucille Ball. I like her initially was thinking in the last few months that perhaps I was on the other side and I could handle going back to working as a physician despite my PD (easy- peeze-no problem). However, as life demands have increased followed by  one thing, another and another, I have begun to feel like things are speeding up on my own conveyor belt causing a big pile up, making the juggling and keeping up a bit more hectic and demanding. This does not mean I am giving up on practicing neurology again or stop my advocacy.

But, I have begun to think more about those of us who live with chronic illness and have a job, trying to maintain one, or are looking for ways to earn a living with a different career after PD diagnosis.

As many of us have learned, it is not always possible to keep working at previous capacity or even at any capacity when illness strikes particularly in the face of continuous fluctuations especially if sudden or unpredictable, as mine has been lately, or as we approach advanced stages and begin experiencing motor fluctuations such as dyskenesias.

According to a British study of 308 Parkinson’s patients, 82% had ceased to work after 10 years of disease, 57% retired early like me due to disease.

We all know life with a chronic disease like Parkinson’s is a constant juggling act. We have to learn to balance our health along with family, social, and work responsibilities. This can be a feat for many.

When we first get diagnosed after the initial shock wears off and reality sets in, we have to consider our financial resources to be able to continue providing not just for those who depend on us; but more importantly for the increasing financial needs that come with being chronically ill.

So as you contemplate your future financial stability, you must start making concessions for a time when you are no longer able to carry out your present job duties or perform any standard job. Think of the worst scenario and build from there but without going to panic mode or being paralyzed by anxiety and fear.

I am sure you will begin to wonder if you should share your diagnosis with your boss or fellow employees.

First, I have to say candidly and with all due respect-it is no body’s business unless you want it to be. If your job is unaffected – may not need to disclose. But if you are having to take off more, or performance no longer the same as it was prior to symptoms of PD, this maybe an indication of the need to discuss diagnosis sooner rather than later. If you are self-employed of course you have more autonomy. You have more flexibility of decreasing hours; keeping in mind as someone who knows first-hand about running a business when boss is ill productivity and quality inevitably begins to decline unless there is someone else with vested interest to maintain. Also when you are the boss, your responsibility to those you employ supersede your take home, this means that when earnings decrease only person affected is you ( particularly at the beginning unless you curtail number of employees and/ or shut business down).

Second, take care of yourself and your health by eliminating undue stress by asking employer for things to make your life easier. Taking more breaks, coming in late once a week, having the appropriate tools to make job easier, higher chairs, work from home, etc. of course the better the worker and more indispensable you are. Subsequently, the more likely to have leverage and demands (needs) met.

Third, prepare yourself mentally about the possibility of losing your job due to PD. Few ways to be prepared for future is to continuously learn new skills (I have become a writer), update your resume, look for jobs that allow you independence, flexible hours, work from home such as telecommunications. The key is to find a new passion. We all know that when we are actively pursuing what makes us happy we infuse joy to others and work is no longer so stressful. After all you have the keys of your destiny to make the right accommodations to help with your disease.

But just because its fun it does not mean it will necessarily be easy. After all work is work and can exert a toll on our bodies. for instance, even though I very much enjoy traveling and speaking, this requires a lot more dopamine than when I am just relaxing at home.

Fourth, ask yourself truthful questions like does my irritability make it difficult for others to work with me? Could my cognitive slowness cause a serious problem at work?, do my tremors get in the way of performing daily activities at work? If you answer yes to any of these questions, you may need to talk to your employer about finding ways to avoid or diminish these symptoms so you won’t lose your job. Perhaps, it may be wise to think about career rehab or alternate jobs, as I mentioned earlier especially within your place of employment. Does your boss need meticulous work behind the scenes? PD patients have been found to be more capable of performing these types of tasks especially if repetitive.

Fifth, do not underestimate your mood- particularly for us women with PD it was discovered in similar study as above that women are more prone to leave the work force earlier due to depression, anxiety, and overall general poor quality of life. We as women also have to recall that we have more stressors such as being caregivers to elderly parents, children, grandchildren, and many times have less financial resources available to us. remember to enlist help of a team of professionals to help planning for future. these include social workers, estate planning lawyers and financial planners.

Finally, You may require to plan for both long and short-‘term costs of medication, home adaptations, insurance and other health care related needs’. This also includes planning or at least thinking weather or not you might apply for social security disability or early social security which can affect retirement plans.

For more information go to :PDF  link below to find financial and legal advice/support.

 

Sources:

http://www.pdf.org/en/science_news/release/pr_1415296989

http://www.pdf.org/fin_legal_work

http://www.pdf.org/en/fall05_employment

When to disclose illness at work

http://www.ncbi.nlm.nih.gov/pubmed/16941456

 

 

 

caregivers and chronic illness, chronic illness, Parkinson's awereness, parkinson's disease, Parkinson's Health

El cambio de papeles- Dra. De Leon

Al continuar la campaña de #EndParkinsons ( #terminemos con él Parkinson) este mes de abril reconocido como el mes de hacer conciencia por la enfermedad que afecta casi 10 millones de habitantes al rededor del mundo no debemos olvidarnos de aquellos que dan de su servicio y amor incondicional para cuidarnos. No cabe duda que el cuidar de un paciente se toma toda una aldea…

El cuidador que podría ser un amigo, esposo, o familiar es parte vital e integral del equipo del cual todo paciente debe tener a su alcance. Pero a medida que transcurren los años después del diagnóstico estas personas también tienen sus propios obstáculos. Con frecuencia estas personas requieren de mucha flexibilidad para poder ajustarse al nuevo papel de ayudante y cuidador. Esta transición en el papel de responsabilidades puede dejar al individuo que enfrenta el nuevo papel un poco aprensivo e incierto de su futuro y pueden manifestarse en síntomas de depresión, ansiedad y conducir al aislamiento.

Aquí les presento unos breves consejos que he aprendido después de años de cuidar a pacientes con enfermedades neurológicas crónicas para que puedan sobre llevar la carga de mejor manera. Es importante de recordar que el cambio de responsabilidades puede presentarse de muchas maneras. Por ejemplo si el paciente es el encargado de trabajar y mantener la familia la esposa tal vez se vea obligada de regresar a la fuerza de empleo por lo cual se verá doblemente afectada por tratar de proveer apoyo emocional y financiero. En estos casos es importante de envolver a la familia especialmente los hijos si son adultos en el cuidado del padre o la madre. Ellos pueden ayudar con el quehacer de la casa o en preparar comidas. Amigos y otros seres queridos también pueden dar una mano cuando sea necesario.

Para poder sobre vivir esta nueva posición es no perder de vista sus propios sentimientos, pasiones, y sueños. Y no dejarse arrastrar por la corriente de la enfermedad.

1.    No espere perfección o saberlo todo. Dejen lugar para los errores que se puedan cometer. Es como ser una nueva madre se aprende en las trinchas de batalla. Solo tiene uno que estar dispuesto a tener nuevas experiencias aunque no tenga tendencia de cuidador. Recuerden que “todos los caminos conducen a Roma.” Quiero decir que hay muchas maneras de hacer la misma cosa. Encuentren lo que más les favorezca y háganlo suyo.

2.    Encuentren valor en su nuevo papel de cuidador. No vean la experiencia como obligación sino como una aventura u oportunidad para crecer y aprender. Ustedes tienen mucho talento póngale ganas y sonrían le a la situación y verán que una buena actitud cambia todo. 3.    No traten de hacerlo todo. No somos una isla. Por favor de poder ayuda a sus médicos, trabajadores sociales, líderes religiosos, y otros familiares y amigos. Asistan grupos de apoyo para evitar el aislamiento. Y visiten las redes de  http://www.pdf.org  o caregiveraction.com

4.    No se les olvide que todo tiene un límite y esto también pasara. Pero las lecciones que pudiera aprender le durarán toda la vida. No dejen de soñar y hacer planes. Como decía mi abuelo que en paz descansa, “siempre hay más tiempo que vida.”

caregivers and chronic illness, chronic illness, parkinson's awareness month, parkinson's disease, Parkinson's Health

When Roles Change-By Dr. De Leon

As we continue to raise awareness for the nearly 10 million people suffering from Parkinson’s disease worldwide, we must not forget the unsung heroes who stand by our side day in and day out.

There is no doubt that caring for a Parkinson’s person takes an entire village…

The care partner who maybe a friend, spouse, or loved one is an integral and vital part of the team. However, as the days and years follow the diagnosis of a loved one with this progressive neurodegenerative disease, the caregiver him or her is faced with challenges of their own.

Often times these people have the task of adjusting to a new role of supporter which requires a lot of flexibility and is no easy feat. This shift in role or expectations can leave everyone especially new care taker to feel unsure of the future, expectations of others including patient leading at times to feelings of isolation and frustration.

So here are a few tips I have learned over the years in being a caregiver and watching many families struggle in the care of their loved ones with neurological chronic illnesses.

Important to recall that the shift in responsibilities can take many forms. For instance, I have known many couples in whom the primary bread winner was the one that got diagnosed with PD subsequently leading to disability and loss of employment which can put a significant amount of strain in an already tense situation. This may require the spouse to get an outside job or new career to be able to provide for family but now they are doubly tasked by not only having to provide financially but also emotionally.

It is important to engage the whole family to avoid burn out-children if they are adults can help to care for the sick parent while the other one works. They may help around the house with chores or providing meals. Close friends and siblings can also be engaged to help out in the care of a loved one.

The most important thing to remember as you navigate the uncertain waters of your new role as caregiver is to maintain your sense of self – and not get lost in the shuffle or chaos that may at times accompany living with someone that is chronically ill.

 

  1. Don’t expect perfection or to know everything. Allow room for errors- taking care of someone else it’s a learning curve just like being a new mom. Make sure to pace yourself. Be open to the experience even if you are not naturally inclined to being a caregiver. Remember, “All roads lead to Rome,” meaning there are many ways to accomplish the same goal. Find what works for you and embrace it.
  2. Find value in your new role. Don’t look upon the experience as an obligation. This is a sure way to fail. It’s all about the attitude. We may not be able t change our situation but we can certainly do a lot about how we tackle the challenge. Remember, to use your own brand of pizzazz to make caregiving your own forte. You have lots of talents and skills put them to good use. For instance, when I took care my grandma I could manage her medications best being a doctor and coordinate for her special needs to be filled by working with other ancillary health staff.
  3. Don’t go at it alone. No one is an island. Make sure to ask for help from your health staff, social workers, religious leader, friends. Try to connect with others undergoing similar situations to avoid isolation- attend support groups. There are many organizations that can help. Parkinson’s team, pdf.org, caregiveraction.org to name a few.
  4. Don’t forget to smile and be yourself. Smiling decreases stress levels and attracts others to you. Draw on your past experience as a source of strength along with prayer and faith.  Look this as a new opportunity for you to grow and develop as an individual. Don’t stop dreaming and making plans for the future. Even if the situation you are in now is not what you would have chosen, taking the new role wholeheartedly with reckless abandonment can prove to be a rewarding experience with lessons that will last a life time that can be passed on to younger generations. See this as an opportunity to get closer to the one you love.
  5. Most importantly, keep in mind that this too shall pass!!! Enjoy your loved one while you have the chance often times they leave us too soon.
caregivers and chronic illness, chronic illness, parkinson's disease, Parkinson's Health

The Top 10 SPOOKY Things Living with PD which Can Send a Frightful Scream! : By Dr. De Leon

1. Getting PD Diagnosis– this can suddenly make your heart stop beating – feels like you have flat lined until a helpful friend comes along.

2. Losing control of your mind. I get off the car to check the mail only to see my car rolling down the hill because I just step out without putting brakes or turning engine off!

3. Losing control of your body– food is flying in every direction except into your mouth as you try to remain calm and poise while attempting to look dignified.

4.Losing control of your bowels. no matter the age, circumstances, or location – this is enough to send one howling and expelling such frightful wailings that causes a chill to run down anyone within ear range!

5.Bladder urgency/loss– if you have to find a bathroom one more time after having gone 20 times in the last 30 minutes you must just flush yourself down the drain as well.

6.Pills,Pills, Pills- all colors, sizes and shapes- how can anyone person take so many medications and not pass out? where do they all go? you think they would fill ,up my stomach and I would not need to eat!

7.Visual disturbances: see playing children all around that no one else can see but the car in front of us that everyone else sees we cannot see well.

8.Doctors, doctors, doctors: I have my own collection of specialists for everybody part even when I look at the mirror I see one staring right at me!

9.PAIN!! EVERYWHERE PAIN!!– what a pain it is to be in constant pain- irritable and shout-y, I have become. Sometimes, I scream just to let out the frustration of being  me with this disease.

10. People Judging: I can’t smile much so must be depressed; can’t talk loud must not have much too say/contribute; constant shaking and shuffling must be mentally challenged.

This Halloween I ask to NOT let your PARKINSON”S DISEASE SPOOK you and others-After all, “the only thing we have to fear is fear itself and perhaps a spider or two.”

Put an end to the fear by self -advocating and raising awareness for others that can’t do for themselves! 

caregivers and chronic illness, chronic illness, parkinson's awareness month, parkinson's disease

Instructions not Included When it Comes to Caregiving: By Dr. De Leon

Instructions not Included When it Comes to Caregiving: By Dr. De Leon.

caregivers and chronic illness, chronic illness, parkinson's awareness month, parkinson's disease, parkinsons dementia

Instructions not Included When it Comes to Caregiving: By Dr. De Leon

Don’t dwell on the disease. Value the moments, the pearls of wisdom, their smile, their humor.” St. Elizabeth

seekcodes_659_26138     Caregiving is not for the faint of heart. I have had to be the caregiver for two of the people I love, my grandmother and father. Although the experience was extremely rewarding, I was left completely emotionally and physically spent when it was all said and done. Being a caregiver requires inner fortitude, perseverance and above all a great deal of love. Love for that person you are providing care for is the only thing at times that drives you and keeps you from losing your wits.  In dealing with my loved ones as a caregiver, I had my moments of frustration as many of you have in taking care of your own loved ones who suffer from chronic illnesses like PD. The problems usually arise from thinking we know what is best for them which may be in opposition of what they think is best for them.   Just because they are physically handicapped this does not mean they are mentally handicapped hence conflict ensues. This is entirely different when taking care of someone whose faculties have diminished as in those with dementia, we must then be the voice of reason. But when someone is still able to make decisions although in our opinion are not the wisest we have to find compromise to respect their wishes, keep their dignity, and maintain their safety.

So how do you decide when to step in and when to watch from the side lines (cautiously holding your breath)?

This question is extremely complicated of when to override their needs and desires for safety sake?

For example, my dad was very frail and getting extremely weak in addition he had fallen twice; yet, he insisted in continuing to use a walker instead of wheel chair. This entire scenario only made me cringe expecting to hear the sound of broken bones at a moment’s notice. Despite my better judgment as a doctor, I had to respect his wishes.

It is important not to fall into a trap as a caregiver of assuming what the person with PD needs. It is best to ask your loved ones their wishes. An honest and frequent dialogue can go a long way in maintaining the personal dignity of the care recipient or patient as well as that of the care partner who will not come across as a tyrant but rather as a truly caring individual.

So here are some tips I learned in providing care:

Learn to compromise– avoid disputes and old issues from getting in the way! During chronic illness especially as a loved one reaches end of life; this is the time to stick together! So as to make him or her feel like he/she still has some independence … instead of forcing the wheelchair in the case of my dad, I explained my concern for him of falling again and breaking a hip and ending in the hospital. Then let them decide based on the information.

Learn to reiterate your concerns in a compassionate manner – I explained to him that we had been lucky until now not to have broken any bones. But, as his bones were extremely frail and he was very weak any small insignificant injury even a simple bump from sliding off the bed could result in a hip or wrist fracture. However, if he did not wish to use the wheelchair, then we had to device another plan to maintain his safety. He agreed with this, he was then instructed to call someone first prior to getting up either from bed or sitting to alert them of his intentions of wanting to be mobile. He then was to sit at side of bed if reclining for few minutes rather than jumping up from laying (although  this was emphasized more for theoretically purposes just so that he  would remember to take it easy because in all honesty he could not jump anywhere when movements  were extremely slow, deliberate and  laborious). These recommendations can be used for anyone with mobility issues especially if getting orthostatic, dizzy and at risk of falling.  I instructed him on appropriate safe use of walker and asked for him to carry safety belt around so if he did slip it would be easier for me or my mom to catch or lift him up.

Learn to coordinate: some of us are better at this than others. If you are good at delegating and seeing the big picture- this is your calling. Nothing is more important than having a game plan! For instance, I am good at this … While my mom tends to the daily needs of my dad, I can step back and see what needs to be done so I can guide my mother and assist her in getting things done. For instance dealing with matters of insurance, are documents in place?  Are Wills done?  Over see funeral arrangements if dealing with end stage disease? Are other legal documents in order? Because, as we know when we are dealing with the task of caring for someone 24/7, we can become so overwhelmed we sometimes can’t see the trees for the forest. This is especially the case when death is imminent, or contemplating placing loved one in a nursing home. Sometimes our judgment can become clouded and we may become paralyzed with grief! Be the one that initiates conversation and steers it in a positive direction to get things done.

Learn to facilitate: emotions tend to run ramped when dealing with a chronically ill loved one.  At times, it is hard to step outside your situation and see things objectively. This is when a friend, pastor, social worker, healthcare professional or in my case a relative that does not live there all the time comes in handy. They can help provide valuable insight into the situation, give impartial advice to diffuse a stressful situation by offering prayer and even referring to other counseling services, support groups and other resources on line and to other community organizations that may be able to assist with specific needs. (I.e. help find a sitter/respite care). When I was caring for my grandmother who had end stage Parkinson’s she would at times get very belligerent and accuse me of holding her hostage since she was bed bound. Being a neurologist, I knew this was part of her illness I knew how to treat and did not bother me. However, when I was at the office and at the hospital having to deal with PD patients all day who were hallucinating and belligerent then come home to same scenario sometimes was a bit overwhelming. It was nice to have friends to talk to and even place her in respite care for a week so that I could decompress. Learn to listen: this is the most difficult task of all! Some of us hear but don’t really LISTEN. Listening takes special skills, understanding, and putting oneself in the shoes of the person living with PD. When we are in a stressful situation we all desperately need to be heard so everyone talks but No one LISTENS! Often times no words need to be uttered to have truly listened and made the person you are caring for feel special, unburdened, understood and loved. A simple kiss, hug, brush of the hair or hand, and even smile can go a long way!

The same rules apply for the caregiver; find someone who is willing to listen to your story. This simple act can allow you as a caregiver an outlet to relieve your own stress and open the door of communication and a way for you to ask for assistance in the area of specific need.

Lastly, learn to socialize: again if you are a leader or a take charge kind of person or event planner, this would be right up your ally. After all, we are all social beings most of us even the shyest of us thrive when we are bonding with others either individually or as a group. Therefore, it is important to plan social outlets to get yourself the caregiver out of a routine. Planning social gatherings with and without the person you are proving care for will help to diminish the risk of  depression, loneliness, feelings of helplessness, spiritual exhaustion which might lead to suicidal ideation in both patients and caregivers alike. The outings or get together will also help to remind those involved of their unique talents and gifts and bring closer together as a couple or family. One activity my grandmother always enjoyed was painting. So we would paint as a family. This was always fun and made us forget for a bit about the struggles we each faced on a daily basis. This is fairly cheap to buy paints, brushes and canvas at a place like Hobby Lobby. Now they even have coloring books for adults but even children’s coloring books are fun to do as a group. Help organize activities for family, individual etc. Put your imagination to work. Even if it means taking them out for an unexpected “ice cream” run, my dad loved this or whatever their favorite activity may be; in my dad’s case fishing (even if it’s just in bucket or fish tank because he got too sick to go outdoors fishing as he would have liked).