Dealing with a severe stroke of a family member: some lessons learned/insights

At the outset, I must state that going through this experience is not for the feint-hearted. Be prepared for many shocks to your intellect and emotional system.

We found it helped to pray to our Father asking Him to help us identify what we needed to prioritise and focus on each step of the way, not allowing other influences to affect our decisions, and also stepping away from the detail every now and them to listen to His prompting and allow Him to show us the way. This is essential, as you will probably find that you are required to investigate many options simultaneously, with very little available time to do so. You will also need to ask Him who you turn to for support in all this.

When you first visit a family member soon after the stroke, that person will most likely look very ill and pale, and will be in bed hooked up to several monitors, if not with assisted life support of some form, and might not actually be awake (they could be in a coma). Prepare yourself and your family members and friends who plan to visit accordingly.

Note that the patient may well be incontinent, unable to speak, and/or unable to use some limbs. Use of the leg returns more quickly than use of the arm, but there may well only be partial or very little use of the limbs long term. Pins and needles or pain sensations in the limb do not necessarily mean recovery. Be prepared for the fact that the patient my require assistance with attending to personal hygiene, using the toilet, bathing, and changing clothes.

There may also be some emotional, cognitive or intellectual effects of the stroke that you will need to look out for and take into account (in both the patient and the spouse/rest of the family).

Treat all concerned/affected with proper consideration, regardless if they refuse to listen to you, as this is most likely because they are not yet prepared or able to deal with what you are telling them or asking of them. Respect individuals’ need to be fully informed, and also to assist them to understand where you are coming from when dealing with all these aspects of the patient’s care and future.

Do not react instead of responding to family members or anyone attempting to provide assistance or support. Take the time and make the effort [despite any resistance] to fully inform all of what you are doing to ensure a comprehensive solution that is best for all.

Plan to meet with the patient’s primary care physician/doctor as soon as possible in order to understand from his/her perspective what the patient’s diagnosis and prognosis are before you could really make any plans or take any decisions, as this is an essential element of the decision.

You will also need to meet with the Occupational Therapist, Speech Therapist and Physical Therapist that will most likely be assigned to the patient’s care, depending on the extent of their trauma, so that you are fully informed of their treatment plans and potential timelines, as well as arranging for the move to a physical therapy center (which you will have to do). The Occupational Therapist will most likely provide you with a list of facilities and centers and contact people who you will need to call to make arrangements for the patient, or who can assist you. They will also advise you if you need to buy adult nappies (Dis-Chem sell them, but you can find them elsewhere as well – check if they must be the pull-up type).

You can delay the process of applying for a wheelchair until the patient is in the therapy center, as they have these at the centers, and (a) the patient’s progress needs to be assessed first and then (b) the patient needs to be measured for a wheelchair that suits their specific needs. Be careful that they do not recommend a ‘Rolls Royce’ wheelchair when all the patient really needs is a VW Golf-type.

You may well need to obtain a power of attorney over the patient’s financial affairs to assist you in this. Remember that someone needs to reconcile and pay monthly accounts, do taxes, suspend or cancel subscriptions such as DSTV, draw cash for prepaid electricity and airtime, etc.

You will need to go into the bank to complete the relevant forms with them to obtain the required authorities or access as well.

Be prepared for the possibility that the spouse might not be capable of being alone at home for too long, as this might not be deemed to be a viable long term option, as that person cannot be expected to clean the house, look after the garden and pool, cook for themselves, etc. in a home that is larger than their needs.

It is a very big eye-opener to see the facilities and their residents, and it is emotionally draining as you wrestled with the concept of deciding for the affected parties when you couldn’t see ourselves living in such facilities unless you had no sense of your faculties any more.

You will most likely be faced with the very real limitation that most facilities are actually so full, with such long waiting lists, that you will not be able to get either the patient or their spouse accommodated within that facility. You will nonetheless need to go through the motions of applying so as to at least end up with them on the waiting list for when availability arises. Some facilities require application processing fees or non-refundable deposits regardless of placement or not, so be on the alert for this.

You will possibly need to explore alternatives such as a ‘bachelor pad’ for the one spouse not requiring assisted living or frail care, retirement villages as well as smaller homes, apartments or flats. In parallel, you will need to get doctor and social worker reports completed so that you can process applications with facilities. You will also need to get a detailed view of the patient’s financial position if you are to complete these application forms on their behalf.

Retirement villages are either full, do not have any frail care available, or cost R1m plus for their units (before levies).

Here is a summary of the options and associated costs we explored:

Options (2016 Values)

1) Patient in frail care, spouse at home

[This could be a very short term solution due to cost]

Kendrick R8922 full, R7664 partial frail care.

Other:

· Libertas R10670,

· Die Pastorie R5900.

· AGS Tehuis R6500 +R3600 application fee non-refundable,

· Huis van der Walt R10244 + ridiculous application fee,

· Badisa = 90% of income, subject to maximums ranging from R4650 to R6500.

2) Patient in frail care, spouse in independent living in same facility (rent out their house to cover the costs)

[This is not actually viable/suitable due to size of rooms (tiny) and cost]

Kendrick R6769 tiny room, communal bathrooms (no alcohol allowed),

· Libertas R6505 flat,

· AGS Tehuis bachelor unit buy at R440k plus levies,

· Huis van der Walt R4657 upwards +R10050 one-off,

· Badisa, tiny room, communal bathrooms R4650 to R6500.

3) Patient in frail care, spouse in independent living and family rent out the home to cover costs

Depends on financials.

4) Patient in frail care, spouse rents out part of the house

Not always viable/feasible.

5) Patient in frail care, someone takes spouse into their home on some basis and then rent out the home to cover costs

Depends on financials and individual willingness/capabilities.

6) Both at home, with assisted living

[This might not actually be viable if the house is too big for them to maintain, they cannot actually afford assisted living, and the cost of renovations for wheelchair friendliness could either be prohibitive or affect long term selling price of home]

· 1 shift (day shift) home nursing R12865 p.m. (R415 per day)

· 24x7 R25110 per month (R810 per day)

· There is a voluntary option where they only take donations, but they then only assist for one hour a day.

· You will need extensive renovations to make the home wheelchair-friendly, especially the bathroom & this could not be viable long-term.

7) Sell the home and patient and spouse move into a smaller, more manageable place that is wheelchair friendly (with some form of assisted living).

Depends on financials from both sides.

Assisted living costs per (3) above.

Be aware of the possibility that the patient may still require therapy at a cost for several months after discharge from the therapy center. Be prepared that the medical aid will likely not pay for this. You will also need to work out how the patient then gets to and from therapy.

A bond or loan from the bank to cover costs is not advisable as the interest rate would be high due to age and income, and the bank will probably want extra life insurance, which is also expensive.

All the best with this.