Caring for your caregiver

Caregivers give a lot of themselves when caring for a PH patient. In doing so, sometimes, they forget to care for themselves. Here are some tips from a PH patient* on ways you can help to make sure your caregiver is getting the care they need.

  • Be patient with yourself and your caregiver as you both come to realize that this diagnosis is not going away.
  • Reset your priorities: in doing so, many of us come to know that we have to lower our standards to allow energies to go where they are most needed. I have found that having my caregiver reasonably rested beats a clean floor any day.
  • For some of us (our household included) financial priorities will need major overhauls. Our family sold our two story townhouse to enable me to live on one level. I know of another family in the process of doing this and I am sure there are many others who have done the same. Most of us can't afford chairlifts. This also makes life easier for my caregiver.
  • Inform yourself and your caregiver as much as possible about PH. In my "career" life I was an R.N. but I have no fear of feeling embarrassed by some of the questions that I pose to my nurse, our doctor or my pharmacist. I don't care if anyone thinks I'm dumb. It is just too important to know the ins and outs of PH.
  • Try to do as many tasks as you can yourself, without taxing your self! Find out from your PH team what activities you as an individual should restrict and which things you can try. There are a lot of tasks that can be done sitting down!
  • Put a lot of effort into scheduling appointments, social outings, shopping etc. Many of us have found that one day out then requires one day home to rest. Think of all the tasks that your caregiver must do to actually get you from A to B. I have postponed and vetoed outings that sounded to the planners like a lot of fun, but actually would create a lot of extra work for my caregiver. All the people to whom I said "Thanks but no thanks" understood.
  • Of course each of my several specialists all thinks their speciality takes precedence. I am not above calling the secretary of a specialist and rescheduling--just this week I declined an appointment with my diabetes specialist. I had the lab work faxed to my GP, so I knew my values were fine and I could put this off for another week. I just tell the secretary that I have to pace myself (I do use that one sparingly.) My caregiver does need a break from all the driving--if it is not crucial, I "space" the appointment as much as possible. Also, sometimes with enough hours in between to allow for doctors "running late", I can see 2 doctors on the same day, in the same hospital.
  • Besides spacing active days with rest days, I have learned how much I can actually accomplish in a day and try diligently to plan accordingly. And I have learned to tune in to my body when I have moved to another level of ability (up or down.)
  • At our house, we keep lists of daily routines as reminders. On the porch door we keep a list of all the things that should be in the car for a usual day out. This way my caregiver doesn't have the added task of remembering everything. Sometimes we even remember to read it!
  • Besides the hospital bag, we keep an emergency room bag, for my caregiver. Long before I had PH, my mother had a fairly complex cardiac condition and we often found ourselves in the ER in the wee hours of the morning. In the ER bag we keep: granola bars, coffee money, bottled water-depending on what is wrong with the patient, the patient may not be allowed to eat but the caregiver needs to eat - cash for when the cafeteria does open, change of socks etc., and a sweater - it gets cold in the middle of the night and they don't give him a blanket. I also add a book for each of us, a note pad, a pen and my PH doctor’s emergency number.
  • If you don't get the flu, there is less work. We make an effort to avoid as many flu germs as possible by hand washing, keeping masks on hand for possible encounters with coughing and sneezing people and we ask people not to stop by if they have a cold or the flu. We also ask our adult daughter and her husband and the girl who helps me for 2-4 hours a week, to get their flu shots.
  • Ensure that your caregiver takes her/his medications, vitamins, exercise and rest.
  • Respite! Make sure that your caregiver has some regular down time. At times when I have been ill with the flu or just on a bad stretch, I found that our local V.O.N. has someone who will visit me for a few hours a week. They are volunteers, who can't do medical care, but they can play cards with me, chat, read and hand me things I can't reach, get herself and I water and tea and of course call 911.
  • Watch for signs of fatigue. When I see them, I call my son-in-law and tell him Dad needs a little extra R and R. We plan a day ASAP for the two of them doing some of his favourite things. I don't need someone with me if I am at my "PH normal"- but if my daughter can't stay with me there is a kind neighbour-friend across the street who will if I give enough notice. *All caregivers need regular respite (I know that too well--I was my Mother's 24/7 caregiver for many years.) And I do realize how difficult it is to arrange for respite--money often being a key factor. It does take a lot of imagination and often "thinking outside the box" for it to happen.
  • Try to keep your house and equipment you need in an organized way, so that it can be located easily when needed. Keep detailed records of which med is due for renewal when and keep a close eye on your o2 supply (It can be so stressful when you run low at a hectic time).

These are most of the things that work at our house-most of the time. When they work, life is just easier for everyone.

Thank you to our patient contributor Michelle Andrews for her insight in this piece.

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