Some things you need to be considering
There are quite a number of things to be considering when someone you love is diagnosed with a potentially life threatening illness. This list is by no means complete but it will give you an all around impression of what may lie in front of you. The list is based on my own experience with a focus primarily on home care. When I hear people say that “We agreed to go through the dying process at home”, I now wonder how quickly they came to that decision and whether they understand the breadth of what’s involved. Hopefully this will help get the thought process going.
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Considerations:
- You will need to decide where you intend to go through the caregiving stage through to a person’s possible death, i.e. home, hospital, hospice facility, nursing home, etc. Having a mutual agreement is important otherwise the loved one dying may feel uncomfortable, agitated and miserable through the entire dying process. Sometimes there is little choice, but if there is, hear what your loved one is wanting.
- If you are going to go through this process at home, understand that the demands can be high
- Increasing amount of time needed by the caregiver during progress of disease. If you have to leave the house for work you may be leaving your loved one vulnerable and in potential danger. Early on it may not be a problem but as the condition progresses it will.
- Help will be needed; this cannot be done successfully alone with the kind of quality and expertise you would want to provide.
- The primary caregiver may need to be around 24/7 towards the final stages unless there are others to help that are trusted
- There will be mental, emotional and physical stresses during this process. Things to do and decisions you had never considered will come in steadily. These may include:
- Wishes that was never anticipated from the dying
- Odd changes in diet at short notice that will need to be accommodated
- Family situations and tensions that were not anticipated
- There will be things happening that are outside of our experience and you must be ready to respond, these can be physical needs or mental needs.
- If using a hospice learn all you can about the use of narcotics (morphine) during the final stage, this is a common procedure. Discuss this carefully with your loved one and hospice nurse before starting the hospice program. This can become a source of contention, so make the decision early in an informed way and then follow it through.
- Your loved one may deteriorate to the point where communication can become very limited. You will find it helpful to work out some form of simple communication if they become too weak to speak. Practice using it, this will become invaluable towards the end if you both can get it to work.
- Understand what your loved one may be dealing with internally – this may be somewhat subtle, but at times it’s pretty clear something is going on. They may be quite content to lay there for hours on end doing nothing except being, and it’s perfectly okay. Other times you can sense an unease, there may be practical things to resolve and it’s important to try and understand the meaning behind what may seem like very cryptic communications (read Final Gifts as noted in the resources section). Don’t assume everything unusual is simply due to hallucinations.
- Get detailed information as to how the loved one will be affected as the disease progresses and what it will do to them physically. Hearing “they will get more tired and eventually die” is unacceptable. If you don’t know what it is you may have to respond to the chances are you will be caught flat footed.
- In understanding the progress of the loved one also understand how it affects their eating and drinking patterns and the best way to help with that. Understand how using IVs or forcing them to eat or drink can make things even worse. Read up on how the body naturally shuts down as a person is getting ready to go or discuss it with your hospice doctor. Without understanding this you may become frightened by what’s going on during the final phase and inadvertently cause your love one some unnecessary suffering.
- Find out from your loved one how they feel about visitors and having people over, for many reason they may not want anyone there. You may have to make that judgment call at some point.
- If at home, having hospice or similar care will be indispensible. The people from hospice are usually very amazing and are very experienced and passionate about what they do. You will have access to doctors, nurses and caregivers. Don’t assume you can handle this alone and manage to keep your loved one comfortable.
- Hospice staff will probably be available several times a week and daily when things get worse, but they won’t be there all the time. Visits are generally 1 hour. The primary caregiver will take on the bulk of the work and someone is going to be designated as the “primary care giver” – very likely you. Find out as clearly as possible how much help they can give you.
- If you have no one to help you other than hospice you should look into hiring additional help. Comparatively speaking it is not an overwhelming expense to hire someone and well worth it but it takes a lot of work to find someone really good. Don’t leave this till it’s an urgent need, begin researching very early because it may take some time to find someone good. This person is going to be taking care of your loved one; do you really want someone questionable? Ask around for recommendations and check out their background and records. You must interview them.
- The physical needs for the caregiver can become overwhelming depending on their age, health and strength. The dying person can find it hard to walk, bathe, find it hard to use the toilet or may become incontinent. You may have to clean the person, keep them dry, change soiled undergarments, and move them around. You may have to do laundry many times per day, change sheets, clean floors, etc. This can be both daunting and demanding. If you physically strain yourself you will have to do all the above in pain unless you have help. Oh, and they do all the above on their own schedule, not yours or the hospice’s.
- The caregiver can be challenged to get sleep. Your loved one can get up all times of the day or night. If they are obstinate they may be trying to walk around when it’s dangerous for them to do so. The risk of falling and breaking a bone at a certain point is very high. This will result in tremendous pain for them and could very likely quicken their death.
- Get a good room monitor/ intercom so when you are away from them it is easy for them to call you and get help. This is critical; don’t skimp on this simple tool.
- As a primary caregiver you must do all you can to get rest, proper food and keep your mind clear. It will not be easy, but remember, if you go down the tubes you will be of no help to your loved one.
- Legal: Work out as much as possible with the loved one regarding how things will be handled when the loved one dies. This includes:
- Power of attorney over health decisions: check your state laws. In some states, if not all, this is extremely important so that when the loved one loses consciousness someone trusted is calling the shots. This includes your ability to decide on cremation, etc. You must have this document otherwise you have no control over what others who are given that power will decide to do. This is different than the general POA.
- Power of attorney over assets: Someone trusted must be in charge of dealing with the estate.
- Spend a little money and get a will created, even if there isn’t much there. Find out what the wishes of your loved one are such as what to do with their body afterwards, how possessions should be split up, etc. Once their wishes are documented it not only makes things easier afterwards but allows them to pass away comfortable that everything will be taken care of.
- Afterwards: It’s a good idea to have a simple check list to refer to when you think the person has passed away. The period just after their passing can be very emotional and disorienting so a checklist will ensure you don’t miss anything and it will make the process easy to handle.
- Know who to call when you think your love one has passed. You, of course want someone to verify they’ve passed and each state has their requirements for verification. The hospice will most likely be the one to take your call.
- You should have discussed how the body is to be disposed of, i.e. grave, cremation, locations, etc. The loved one will most likely have a preference as to what they want done.
- Know the procedure for obtaining a death certificate(s). You should order several. The mortuary should/can supply these. Be sure to get them plus some copies (legal copies will have VOID printed all over it).
- Work with a mortuary early enough to sort out the details, plans and costs.
- Have the loved one create a detailed document with all their accounts, email accounts, passwords, etc. while they are healthy and clear. At a certain point it may be too fuzzy for them.
- You and your loved one should create a document with all the people you want to make sure get notified of his/her death and in what order (more urgent to less urgent)
- Consider if you want to publish an obituary and in what papers/publications.
- Do you want a Facebook memorial page or something similar?
- Do you want to hold a live memorial? What will that look like? If you are going to try and organize this while you are grieving you may find it hard to do. It will help to know what you plan to do before your loved one passes.
- Grieving: I’ve got to say a little bit about grieving. Grieving is a serious and real part of losing someone very close to you, especially when you are also the primary caregiver. I’m not saying anyone can be prepared but at least have an awareness that the chances are you’ll have to go through it. Learn something about it so it doesn’t come as a surprise having you wondering what’s going on. The hospice should have a professional grieving counselor; it is good to speak with them and understand more about it. Even afterwards they are available for counseling. There are many good “how to” books as well as memoirs and diaries from famous people about their grieving experience such as Joan Didion’s The Year of Magical Thinking.
- Additionally: consider the trauma and the effect taking care of your loved will have on you while watching them disintegrate and withdraw. This added to the grief of loss is a potent cocktail. Some doctors have likened this experience to Post Traumatic Stress Disorder. Don’t fool yourself into thinking you will be immune.
Conscious Departures 
Ira,
This is very good and comprehensive.
I went through this with my sister two years ago (ovarian cancer).
I will share this with others.
Thank you.
Lisa
Thanks Lisa. I think you can appreciate how important it is for someone who hasn’t gone through this yet. It’s not a complete list, but the things that definitely stood out for me while caring for Kris.