Caregiving

this caregiving checklist, a basis for caregiving what and how, is not comprehensive but will help you to identify ancillary equipment you may need in caring for your elderly parent:

bedroom

  1. bed rails
  2. pressure relief mattress
  3. mattress covers
  4. incontinence aids (bed sheets, pads, knickers,bed pans)
  5. moist wipes (for everything)
  6. bed trapeze
  7. overbed tray

support pillows

  1. bathroom
  2. grab rails
  3. raised toilet seat
  4. hand held shower
  5. shower chair
  6. small tie plastic bags for soiled incontinence knickers, used wipes which can’t be flushed down the lavatory, used latex or vinyl gloves
  7. cream lotions (after shower or bath, dry skin, for easily bruised skin)
  8. towels and more towels ( you can’t have enough)
  9. safe nail scissors (hands and feet)
  10. denture cleaner tablets
  11. air freshener

daily aids

  1. wheelchair
  2. walker
  3. blood pressure monitor (most accurate ones are placed on the upper arm)
  4. oxygenation monitor (if the parent suffers respiratory disease)
  5. thermometer
  6. bandages and sterile pads for wounds
  7. scissors
  8. antiseptic cream
  9. saline solution
  10. camomile tea (applied cold to eyes, this is excellent for cleaning around the eye and it allows the eye to retain moisture)
  11. surgical gloves (can be bought in pharmacies and some supermarkets)
  12. easy drink plastic glasses with straw
  13. chair cushions (could be an inflatable invalid ring)
  14. bibs
  15. nose cleaner (various on the market) I use a baby nose cleaner with saline solution. It’s an uncomfortable process for your elderly parent, but extremely effective
  16. pill organiser
  17. slipper socks
  18. incontinence knickers or pads
  19. heaters, central heating, feet warmers, hand warmers

documents & information at hand

  1. keep all medical records together – hospital and specialists’ assessments – x-rays – diagnoses and medications prescribed by doctors. You should be clear about your parent’s relevant medical history to provide information especially in times of medical emergency
  2. a handy list, perhaps on your mobile phone, of all medications taken by your parent together with dosage for each medication
  3. telephone numbers: doctor, ambulance, relatives or supporters and caregiver professionals, priest or other spiritual advisor, funeral home or undertaker with whom you should have made previous arrangements in the case of your parent’s death
  4. your parent’s social security number and/or national health card
  5. your parent’s private medical insurance details if relevant
  6. emergency number for oxygen equipment supplier in case of equipment malfunction or failure
    your parent’s bank details (I’d advise to ensure that you, as primary caregiver for your parent, become a beneficiary of your parent’s bank account well before your parent becomes cognitively impaired . This will ease the burden of closing accounts or transferring funds on your parent’s behalf at the end of life).
  7. any documents relating to your parent’s assets
  8. your parent’s last will and testament (if available)
  9. Go to this page for recommendations on caring for a parent with last stages of dementia and preparing for the inevitable.

living with dementia
There are no “hard and fast” rules. There are indicators as to how you can make life more gentle on your elderly parent.

The first thing to recognise is that your parent IS the same mother or father you’ve had all your life. Many people tell me that “your mother is no longer your mother”. What? That’s patently not the case. Mother has developed an illness for which she needs care and treatment. The fact that she has difficulty in communicating, or has lost the ability to remember does NOT imply that she is no longer the person who gave birth to me, the person who nurtured me, the person who tried desperately to look after and protect me. Would you say that a person suffering from terminal cancer is no longer the person they have been all their lives? Or someone who is stricken down with multiple schlerosis, or cerebral palsy? No.

Once you can come to terms that your parent has been “overtaken” by a progressively debilitating and chronic illness, you have a road map which will needs filling. The “caring map” will be determined by the level of dementia diagnosed by the doctor or gerontologist. In general, medical professionals use a tool called the Reisberg Scale to measure the stages of Alzheimer’s. With sufferers of vascular dementia, the most widely used test for determining (vascular) dementia and its current stage is the Min-Mental State Examination (MMSE) developed by Folstein. Both the Resiberg Scale and the MMSE documents can be downloaded by clicking on the links. There are other reputable scales used by clinicians to determine the severity of a patient’s dementia, including the CDR scale, and the Global Dementia Scale.

Caring parameters change according the severity of the dementia. However, there are constants:

  • hygiene
  • communication
  • physiotherapy
  • provision and periodic review of medication
  • sleep
  • documentation

hygiene
Whatever the stage of dementia, your parent will need optimum care or supervision of his/her toileting. Early stages of dementia will to some degree impair your parent’s recognition of need for hygiene. It goes without saying that cleanliness is of paramount importance, not just in terms of keeping possible causes of infection at bay, but also to maintain human dignity.

As dementia sets in, so dependence on you as carer will increase, to the degree that by stage 6b on the Reisberg Scale your parent’s hygiene needs will depend totally on you as carer.

communication
Most of us never have to come face to face with dementia. I personally only knew one person, the father of friends of ours, who finally died of Alzheimer’s. We are social animals who depend on communication with the rest of the pack, with our siblings, children and related circles, with society, co-workers. We’re “in touch” with events. We read, write, play. We love. All and many more personal and societal needs are based on our ability to communicate with others. The dementia sufferer slowly loses her cognitive functions which allows us to relate both to space, time and of course, to other people.

As carers, we have to make a readjustment to the way we communicate with a dementia sufferer. How? The first thing we must accept is that we CAN communicate, although not particularly efficiently, with our cognitively impaired parent. During the final stages of dementia, perhaps as early as stage 6 on the Reisberg Scale, communication will feel one way and seemingly useless. It’s important we don’t judge our own efforts to communicate by our own “active life” standard. As many clinicians tell us, the last sense we lose is that of hearing.

Throughout each stage of dementia, carers should talk gently to their parent, not be abrupt, use touch to reinforce presence and caring. Soothing music or music which you know your parent liked before the illness, has shown to be an excellent stimulus to help “connect” with emotions and is of itself calming. This may be useful for dementia sufferers who also experience delirium.

physiotherapy
As our parent declines, the need for physical stimulation increases. This is not to say that we should start our parent on a training regime to run a marathon! As our cognitive functions become increasingly impaired, so do our physical functions.

As far as possible, we should try to make our parent as physically independent as possible for as long as possible. Nevertheless, we should ensure her safety as priority. As soon as your parent’s physical mobility starts to become impaired you’ll need to supervise most if not all physical activity. If your parent has suffered one or various strokes or mini-strokes, she will need physiotherapy. Strokes may cause part or full paralysis, or mobility impairment of limb or part of a limb, or face. In most cases, if treated immediately, the impairment can be substantially reduced, and as in the case of my mother, can be eradicated.

provision & periodic review of medication
It goes without saying that your parent must be seen regularly by a gerontologist. A GP just won’t cut it! GP’s are fine for general ailments and for referring you on to specialists. They are NOT specialists in aging sufferers of dementia. As your parent progresses in the disease, s(h)e’ll need to be reassessed, and the likelihood is that medication may be increased or modified. I can’t stress how important it is that a suitably qualified gerontologist (best if it’s a psycho-gerontologist) assess your parent at least once in every 3-4 months. No dementia sufferer is the same, although there are general time frames on the progression of the illness. It may well be that your parent remains stable for months, but the reality is that changes may occur within a week. As you become more versed in recognising the progression of the dementia (and you will), you’ll be able to assess the need for medical revision. As an aside, having y9our parent assessed on a regular basis will also provide you, the carer, with greater peace of mind.

sleep
With the progression of loss of cognitive powers and comorbidities, sleep disorders will become increasingly prevalent. Although dementia is not the sole cause of sleep disorder. Disorders can include insomnia, aggressiveness, restlessness and emotional confusion. The most common sleep disorder in dementia sufferers are: sundowning, increased daytime sleeping, less effective night time sleeping, increasing night time awakenings. These disorders may happen at any stage of dementia, but begin to make real impact (not in all dementia sufferers) in the later stages. You’ll have to make provision for this eventuality, and prepare and organise yourself to cope with the onset of lack of night time sleep. There is no way that a single carer can cope with providing care for a parent who isn’t sleeping at night, and care for that person during the day as well. I did it for something like a year and I got to the verge of a breakdown. That doesn’t help with the primary objective of looking and caring for your parent! You’ll need to get care help for the nights…rather than the daytime. It’s imperative to monitor your parent throughout the night. Buy a good quality baby monitor (with or without a video monitor). Remember to consider how far away from your parent’s bedroom you’ll place the receiver – generally, the more walls and floors between receiver and monitor, the less reception you’ll get between the two. Make sure to get advice from the shop or get information first from the internet. Mother has had countless sleepless nights. My own experience is that often you can do nothing to alleviate actual sleeplessness – you can only ensure that your parent is not harming her/himself, which in mother’s case is important as she moves around the bed endlessly and puts her feet or her head in between the bed bars.