The Journey

Nurses’ favorite patient Proud Dad with Mike (2) Mike (5) enjoying winter Sisters always there

Part I: End of Life Care

Discussing end of life care and the person’s wishes is difficult even without the additional challenge of an intellectual/developmental disability. There are multiple resources on how to do this and these can be found at these web sites:

Note: Many of the web sites also address how to discuss the death of a family member to the disabled individual. You may find these sites helpful when faced with that task.

Respecting His Wishes

I did not find these web sites until after Mike had died. And for him, it would not have made any difference. He wouldn’t have understood at all as he had no comprehension and had an inability to learn.

My mom would say that it was totally depressing reviewing his IPP (Individual Program Plans). Mike had the SAME IPP for decades. Literally decades.

And here we are facing the end of his life…. A life that was managed in the best way possible given the resources and knowledge at the time. I knew that Mike would not understand. I knew that we, the family, had to help him through this last experience he would have on this earth. I knew that we had to make his passing as painless as possible. Was that his wish? I had no idea. I had no idea of anything. I only knew, that for us as a family to manage this for him, we would do the best we could, make this as smooth as possible, and as painless for him as possible.

After his death, I would read books and articles on hospice care. All of them, every single one, said to respect the wishes of the one who is dying. I found absolutely nothing, not one article or book, on how the family is to manage the death of someone with an IDD. Someone who could not articulate his wishes as he faced the end of his life. I know that Mike is one of the lower functioning patients with IDD. I know the spectrum is large and many IDD patients will have the ability to express their wishes. The websites I found just didn’t apply for my brother.

Mike (49) with his beloved coins Family wagon train

Part II: Preplanning

There is no easy way to say this, but this section refers to completing the tasks of preplanning for the funeral and burial. This is very difficult to do. However, it will be easier to do so now before you are faced with that decision after the death of your loved one. In addition, the hospice nurse will ask you for that information as hospice care starts.

Talking End of Life... with people with intellectual disability (TEL) has a useful module on “Teaching the planning options: Funeral wishes“. Many of the links at the End of Life section also have information on preplanning. Review them if you have the time as you work on this aspect of the reality that you are facing.

Forethought, An Amazing Gift

Mom and Dad gave us kids a wonderful gift: the gift of preplanning. When Mike was ill in 1994, the initial prognosis was he was going to die. This spurred Mom and Dad to go to a local funeral home and sign pre-need documents. This meant Mom, Dad, and Mike had a place to go after death. They had decided on cremation, selected urns, and selected their niche. It was all set up.

When Dad had passed away, we simply had to call the funeral home for them to locate the paperwork. We paid the differences in some costs, but it was essentially all set up. When Mom passed away nine years later we “knew the drill” so to speak and with the preplanning, everything went very smoothly.

Then sadly, we knew it was going to be Mike’s time. He had entered hospice on a Friday afternoon. On Monday morning, the first business day of that week, I called the funeral home and asked them to find the paperwork from 1994, 23 years ago. A return phone call affirmed they found the paperwork and I told them it would be needed within the month. They set aside the paperwork and notified the appropriate department so when their services would be needed, there would be no confusion. Little did I know it would be less than two weeks for us to need their services.

Content with pen Pennies from heaven Mike (3) in his favorite position

Part III: Hospice Care

This is the really, really hard part...

The Advocate

This is the really, really hard part. Your focus is on the terminally ill person. If you are fortunate, the individual is able to convey decisions that you will need to make for him or her for pain management, nutrition, and so on. If your IDD family member is non-verbal then you will have to make those decisions.

There are numerous books on hospice care and what it is like to go through hospice. They are all very factual. They are all helpful. But almost all focus on the patient’s wishes. We were in the land where no one would ever know Mike’s wishes for the journey that was in front of him. My wishes, the family wishes, became our guidance through this time. We knew what our deceased mom and dad would want, and therefore, by proxy, it became our guide for our brother.

You are, in a very real sense, the dying person’s advocate. For the severely disabled, like my brother who was non-verbal, you become the interpreter. Being the interpreter is hard and emotional work. You have to know the person well enough to provide guidance for the hospice nurse and the caregivers. Or in my case, you HOPE to know the sounds/noises/nuances of body language well enough to do what you feel is best for the dying person. The hospice nurse is at the home for a short period of time. It is you and the caregivers who ultimately provide the care that is required.

The biggest issues with some patients identified with an intellectual/developmental disability are the behaviors of the individual. The hospice personnel is just not familiar with the individual’s behaviors. The first step is for the hospice and caregiving staff to understand the person’s behaviors. This will provide some background to the caregivers regarding the disabled person. The knowledge will help them in their care of your loved one.

Thankfully there are some tools that you can use in the early days of hospice.

Merging IDD Behaviors and Care Management

Somehow you have to merge behaviors into the best care possible. Hospice staff have some common plans for basic care management for their hospice patients. But with intellectual/developmental disabilities, they have to take that care plan and modify it based on the behaviors. Normally the hospice nurse would ask if there is a preference for a specific situation. But with a patient with a disability, that can’t happen. More of our story:

The caregivers were telling the hospice nurse that they found Mike on the floor in the early morning. My brother was on the tall and heavier side, especially as the ascites grew and his stomach bulged more and more. They couldn’t lift him up from the floor. They felt the best place for him was in his hospital bed that we had delivered to the hospice home.

The hospice nurse turned to us and talked about him being on the floor and asked if I had any issues with that. I told her not to worry. The floor was Mike’s “happy place” and where he took joy in playing with his coins. The hospice team put a mattress on the floor giving him a familiar place during this time of great distress. I would like to think it gave him comfort.

Another example of merging IDD behaviors with care is the bed alarm. The concern for Mike was when he would leave the bed to sit on the floor. If the staff finds him on the floor, do they have to record that as a fall and report it? The hospice nurse advised we get a bed alarm for him. The Bed Alarm is a pad that when the weight is removed, an alarm will sound. We placed this on the bed, but it was activating every time he would move. They moved the bed alarm to be at the side of the hospital bed so that when he stepped on it, it would alarm. While he was still physically able, Mike would then avoid the bed alarm to prevent it from sounding. You can imagine the consternation this would give the staff! But within a day the alarm pad was no longer necessary as he became too weak to leave the bed.

Medication Management

As the family member or primary caregiver, you will be called on to help with the patient’s medications. The medications are numerous and can be confusing. Often the hospice nurse will write orders and provide the caregivers’ instructions on medication dosage and frequency. If the hospice service does not provide you a summary document, you can use the medication management tool for everyone to reference which medication to give when. This chart can be modified to make it useful for you. You can also buy a dry erase board and place this same information on a board for easy reference, as the information changes frequently.

For Mike, this part worked fairly well. The one snag we ran into was the difference between mg (milligram) vs ml (milliliter). The staff mixed up the two and inadvertently gave Mike lower doses than he should have received. To rectify this issue, the hospice nurse and I filled syringes with the liquid medicine, labeled them, and capped the syringes for easy administration. Every time the hospice nurse would visit, she would get out the vial of medication, hand me the syringes, and I would proceed to fill numerous syringes for his needs. This system worked well until his death.

The hard part, the worst part, of medication management was the PRN (as needed) medication. The orders are written “as needed,” which for you and I means that we can request the medication. But what do you do when the patient is non-verbal and cannot request medication?

My brother could not speak, and he would not even know what to ask for. I remember the hospice nurse talking to the staff about not getting behind in pain management because Mike was in pain. How did we know? He was groaning and agitated. I was frustrated because he wasn’t receiving his PRN medications.

As the primary caregiver or family member, the hospice nurse will turn to you and ask… what does that sound mean? Is s/he in pain? Can we ask him/her? In Mike’s case, we did ask him in the beginning. And he indicated to us that he hurt in his stomach, where the ascites (an accumulation of fluid in the stomach area) was building up. How did he indicate it to us? He waved his hands in that area and made his noises. We knew that he was hurting there. That helped the hospice nurse. She discussed with us ascites pain management, where we were then and where we could go in the future.

I told the hospice RN to decrease the frequency between the “standard” medications to allow for the staff’s failure to recognize Mike’s pain. An example of this would be an order for morphine. The hospice RN would write the order of every 6 hours and additional doses as PRN. After I saw what was happening we changed the morphine order to every 4 hours and additional doses as PRN. This meant Mike would receive pain medication more frequently to accommodate the failure to properly manage the PRN medication.

We designed a chart so that the staff and family members could assess behavior and then determine if additional medication is needed. You may find this chart on the Tools page. The template we created gave the name of the drug, its purpose, frequency of administration (that is, how often you can give it), and most importantly, the behaviors that can prompt you to use more of the drug. In other words, use the chart to administer more of a certain drug based on the behavior that you observe.

We also started staying at the hospice home longer to prevent this issue from arising. We developed relationships and put effort into over-communicating with the hospice team so when we weren’t there, they were able to pick up where we left off and increase dosages beyond what was prescribed.

You know your loved one the best. You can interpret their behaviors and be their champion when they don’t have a voice.

Changing Medication Administration Modes

When the patient has a hard time swallowing, work with the hospice nurse to determine which medications can be crushed and suspended in water (or a liquid medication) and given to the patient by either a spoon or a large-bore syringe (no needle). This makes it easier for the patient to swallow the medicine. The hospice nurse will show you how to encourage swallowing of the medications. If possible, the hospice nurse will convert the pill medications to a liquid medication. Or the nurse will switch to a different drug that has the same effect but is in liquid form. This is a very fluid time and medications will change quickly and frequently. Reflect these changes in the medication charts which are on the Tools page.

Physical Changes

Physical and behavioral changes will come as the disease progresses. The eating, drinking, and bodily functions will change. Work with the staff and convey all the information to the hospice nurse. The nurse will be asking these types of questions:

  • How much is s/he eating? How frequently?
  • How much is s/he drinking?
  • When was the last bowel movement? What color was the stool? Was it formed or loose?
  • When was the last urination? What color was the urine?
  • Does s/he seem “in distress”?

As the disease progresses, and as the body shuts down, more changes occur. These are hard to hear and absorb. The bowel movements will slow and cease. The patient stops eating. A spoonful of food becomes the norm, and even these will cease. Water or juice will be consumed, but eventually, there will be difficulty in swallowing. Urine, once yellow, will become brown as the kidneys shut down. The patient will transition to a diaper when no longer unable to use the commode, even if it is by the bed. Sponge baths will become the norm. More “hands-on” physical care will be required as the patient weakens. Bathing, changing clothes, changing the diaper or other pads… these will become your tasks as time passes unless you are fortunate to have caregivers who can perform these tasks. But if they are not available, then you are the one who does them.

I would listen to the hospice nurse talk to the caregivers on each visit. The above questions were asked and the staff would answer. As Mike’s urine became brown, the nurse asked if they knew why? The staff answered, he needs to drink more water and then his urine will become yellow again. The hospice nurse had to say… no… this is hospice. She then instructed the staff that Mike’s kidneys were shutting down and then proceeded to provide information on what would happen next. I always listened attentively to these sessions as it gave me information on Mike’s progress in hospice. I was trying to gauge, however difficult, when to call my sister to come home for Mike’s final days. This assessment, this progress report, is so incredibly hard to hear. Even though you know the physical body is shutting down and preparing for the end of life, until you hear it, and until it becomes reality, somehow your mind always holds onto some kind of hope.

As the end nears, sometimes oxygen may be administered. This is not always the case, but for Mike, it was given because of the ascites fluid building in his lung cavity, which impaired his ability to breathe. To decrease his body’s stress oxygen was administered to help him breathe.

Mike fought this quite a bit at first. He would remove the nasal cannula and the only time he would wear it was when he was asleep. But with the passage of time, he got weaker and he no longer fought the nasal cannula. This is an example of a behavioral change that will occur as the physical body starts to fail. Mike stopped playing with his coins and stopped some of the IDD behaviors as he got weaker.

As the patient stops consuming fluid due to an inability to swallow, the hospice nurse will provide sponges on a stick. These sponges are to be soaked with water and then used in the patient’s mouth and lips to provide a fluid and ease the symptoms of a dry mouth. Lip balm helps to soothe cracked lips. We used this with Mike in the last 24 hours of life.

Some patients develop terminal agitation. In our situation, our brother was continually trying to get out of the hospital bed. He kept trying to climb over the bed rail. The worry is that he would fall in his attempt to get out of bed. He would continually groan and he kept grappling the hospital bed rail to try and get out. He never could, and as he got weaker, his attempts were more feeble.

He was also trying to do some self-soothing behaviors that had helped him in the past. He would get weaker and weaker and couldn’t do the self-soothing behavior. In those instances, I would help him. I would put my brother’s legs into a position that he liked and used all the time. However, because he was so weak the position wouldn’t hold. Sometimes I would hold it for him if it soothed his behaviors. My brother loved the sounds of coins and he would play with them endlessly. In his last days, as he was so agitated, I would take the coins and move them from hand to hand so he could hear the noise. It did stop his agitation for a short time. If you can, and if it helps, perform those behaviors to see if it will slow the agitation and give him comfort.

With all of the above, you will know the end is coming. You have the signs, though you may not recognize it. It is coming quickly. It is coming faster than you believed possible. We had discussions about whether it was kinder to increase his drug dosage so he would sleep, or is it kinder to let him be mildly agitated. In the end, there is no answer. You do the best you can. You try to determine what is best and take the appropriate action.

All of this is very short term (as in minutes). In the end, to decrease the agitation we increased his medications so he could sleep.

Part IV: Death

If the hospice staff is not present, call them immediately to confirm the death. Take note of the time of death. Once the hospice staff confirms the death they will assist in contacting the funeral home for pickup. However, this is YOUR time, the family time, to say goodbye. Take your time. The nurse will want to know when the pickup should occur. Be sure that everyone has the time necessary to say goodbye.

Mike died very, very quickly. The doctor had given us a time frame of 6-8 weeks of life after diagnosis. Instead, Mike died 28 days after the date of diagnosis. Mike was in hospice a mere 11 days before death. We were fortunate in that we had one sibling and the hospice nurse present at his death. The rest of us came to the hospice home to say our good-byes. We had our private time with him. I will say this fact and though you know it intuitively, the reality is different than you think: The body cools incredibly quickly after death. I was amazed at how quickly it occurs.

Remember the bed alarm that we had used with Mike earlier? The one to alert the staff that Mike was trying to get out of bed again? The bed alarm had been placed under him just in case he tried to get out of bed as he got weaker. After his death, the funeral home came to pick up his body. As the staff lifted his body, the bed alarm activated and sounded. Our family, and the caregivers, all laughed at this. A time of levity and poignancy in an otherwise trying time. We all smiled knowing how Mike was and how he tried to avoid that bed alarm.

The hospice staff will provide instructions to the caregivers on medication disposal for any unused medications.

Part V: After Death

The funeral home will contact you after they have received the body. They will need you to go to the office to sign papers and to direct them in fulfilling the final wishes for burial. The funeral home will take care of generating the death certificate and notifying the state agencies.

Note for CA only: You need to turn in the social security, Medicaid and Medi-Cal cards along with the death certificate to the regional office.

Most hospice organizations offer bereavement support. The passing of any family member is difficult but it is even more difficult when the person has been disabled. You wonder so many things: did we manage the pain appropriately? Did I interpret that sound correctly? All the wondering of… did I do the right thing? Did I make the right decision? All those questions are compounded when the person has an intellectual/developmental disability.

Mike was gone. I felt like we had been going at 100 mph. I had constant phone calls with the hospice nurse as we coordinated schedules and discussed Mike’s current condition. I communicated everything to the other siblings. Figuring out who could be with Mike at that time. Sending emails, texts, and trying to keep everyone informed. And then… then… it just all stops. All of a sudden. It all just stops.
You feel this incredible emptiness but there are things to do. You have to go to the funeral home and sign papers. You have to notify family. You have to notify the people who took care of Mike. You have to turn in all his paperwork to the Regional Center. You have to remove his belongings from the hospice and decide what to do with them. Those are all physical, material things you have to do after a death.
And afterward, when you have a chance to breathe, when you have a chance to process what just happened, you wonder. You constantly wonder. And because of Mike’s disability, it was difficult for anyone to understand what we went through. One acquaintance said to me… “I hear your brother died. I’m so sorry.” And I started to explain what happened, but the person said… “Wait, he couldn’t talk? At all? EVER?” And the person couldn’t fathom this and was struggling to understand and kept asking me more questions. To the point where I wanted to say … just stop.
My heart was breaking into a million pieces trying to recount how he was in life with his disability. I wondered how to get out of this discussion without breaking down into sobs. I had gone through death and bereavement before with my parents. But Mike’s death was different in so many ways that it was a challenge to process. And that difference centered on his disability and the challenges it presented during his life.
Mike was the youngest of the children. After Mom and Dad died, he was ours to take care of. I had worried, as my parents must have worried, who would look out for Mike if he was the last living sibling. How would the family look out for him if he outlived us all? Who would make sure that the State would properly take care of him? In many ways, it was a blessing that his death was the first of us siblings. We took care of him through life and death. He was our generation. It was our privilege to be by his side. It was an honor to know and love him.