Making life easier for patient and their caregiver
Taking care of a terminally ill patient is not easy. The caregiver needs to
Call them if you want update; not the other way around. The caregiver already has their hands full helping the patient, on top of whatever personal stuff they have to do e.g. work, family, R&R.
In addtion, in my dad's case, if you are going to suggest something major or convince him to change his mind, please involve the caregiver. Often times, he forgets important information or doesn't consider certain critical factors. This means that you won't get the whole picture if you speak only with him and so at best your suggestion becomes useful but at worst it could have major repercussion. The following story (a follow-up from this post) exemplifies this.
My dad was dependent on others on a few things, most notably getting on and off the lazy chair. This was crucial because his legs were hugely swollen due to water retention and so needed to be elevated. Palliative Care Unit (PCU) doctor also said they need to be clean to avoid infection, something that he needed help with too.
We could help with the cleaning but not the to-and-fro lazy chair 24 hours/day. Even when we helped him got onto it, after like 20 mins, he would like to get down again for various reasons. Now imagine this going on many times within 24 hours.
When we brought up the option of nursing home or lived-in carer (the latter’s much harder to get, in my opinion), he chose to try nursing home as a first option, which is great because not only nursing home can help him with the issues above but there are doctors and nurses who can help him medically. This assistance became more important after he decided (unilaterally, without consulting specialist) to discontinue the bone drug infusion that was minimising risk of fracture to his hip bones.
I confirmed with him once more that this was his first option, before we (together with my siblings) commenced searching for good nursing homes. We visited three so far.
Later, somehow after talking with some well-meaning relatives, he changed his mind i.e. he wanted a lived-in carer. It would take time to find suitable lived-in carer since we have yet to start to search (this change is sudden). Yet, he refused to temporarily stay in a nursing home to get help with the issues stated above until we find a carer or until those issues go away.
Later on, I found out that the relative had assumed we could get a 24-hour home nurse (they said need to be medically trained). If they had discussed with me, they would had known that
They should ask themself: are they making life easier for the patient and their caregiver?
- be familiar with the prescribed medicine
- help patient to manage their symptoms
- be with patient during consultation wtih doctors, especially if the patient forgets and/or misunderstands certain relevant information
- discuss with patient whenever options are available and help them implement the chosen options
Call them if you want update; not the other way around. The caregiver already has their hands full helping the patient, on top of whatever personal stuff they have to do e.g. work, family, R&R.
In addtion, in my dad's case, if you are going to suggest something major or convince him to change his mind, please involve the caregiver. Often times, he forgets important information or doesn't consider certain critical factors. This means that you won't get the whole picture if you speak only with him and so at best your suggestion becomes useful but at worst it could have major repercussion. The following story (a follow-up from this post) exemplifies this.
My dad was dependent on others on a few things, most notably getting on and off the lazy chair. This was crucial because his legs were hugely swollen due to water retention and so needed to be elevated. Palliative Care Unit (PCU) doctor also said they need to be clean to avoid infection, something that he needed help with too.
We could help with the cleaning but not the to-and-fro lazy chair 24 hours/day. Even when we helped him got onto it, after like 20 mins, he would like to get down again for various reasons. Now imagine this going on many times within 24 hours.
When we brought up the option of nursing home or lived-in carer (the latter’s much harder to get, in my opinion), he chose to try nursing home as a first option, which is great because not only nursing home can help him with the issues above but there are doctors and nurses who can help him medically. This assistance became more important after he decided (unilaterally, without consulting specialist) to discontinue the bone drug infusion that was minimising risk of fracture to his hip bones.
I confirmed with him once more that this was his first option, before we (together with my siblings) commenced searching for good nursing homes. We visited three so far.
Later, somehow after talking with some well-meaning relatives, he changed his mind i.e. he wanted a lived-in carer. It would take time to find suitable lived-in carer since we have yet to start to search (this change is sudden). Yet, he refused to temporarily stay in a nursing home to get help with the issues stated above until we find a carer or until those issues go away.
Later on, I found out that the relative had assumed we could get a 24-hour home nurse (they said need to be medically trained). If they had discussed with me, they would had known that
- home nurse doesn't stay overnight and in fact, doesn't stay long
- even if hire trained lived-in carer (but not medically trained), the cost is prohibitive e.g. RM4500 for 5.5 days a week
- it is not viable, given above
They should ask themself: are they making life easier for the patient and their caregiver?
Comments
Please don't forget that I am always available should you need help or advice. I am still a volunteer for Hospis Malaysia.