Role Of A Caregiver In Late Stage Parkinson’s

Parkinson’s has even more complex needs towards the end of life. As the patient transitions towards the end stage, they may stand or walk for short periods unassisted but require assistance in daily living and can’t live alone. The tendency to fall while standing or walking is higher and the patient may freeze or stumble. Round the clock assistance becomes necessary at the end stages.

Read more about the caregiving in mid-stage of Parkinson’s here.

Towards the end stages of Parkinson’s, the patient may suffer from one or more motor-related issues such as Bradykinesia, rigidity, resting tremor, and postural instability. Severe posture issues also arise due to concerns with the neck, back, and hips and patients might require wheelchair assistance as well.  The patient may also experience non-motor symptoms such as dementia, hallucinations, and insomnia.The patient could feel drowsiness more often or could become unresponsive. Breathing could be labored or shallow, and patients could also lose bladder control.

Caregiving in the end stages of Parkinson’s

1.    Hands-on assistance to move around the house

With the loved one requiring aid in almost every task, the caregiver must be able to assist without injuring themselves. Caregivers could also consult Physical Therapists to help. Inability to move becomes common while initiating movements and this freezing also causes falls. Caregivers could use visual cues, music or rhythm to help the patient move more predictably.

2.    Medications to ensure some relief

While the efficacy of medications begins to wane as the illness progresses, the focus at this stage is to comfort the patient physically and emotionally.Treatment strategies now,have subtle changes in drug and dosage to combat the worsening symptoms. Caregivers need to monitor medication and dosage and continuously check with the doctors on what could be done to reduce the increasing “off-periods.” Patients could be forgetful, end up taking wrong medicines, or even resist medication in some cases. Caregiver must ensure medication is given on-time and could take help of reminders in apps such as the  Caregiver Saathi App.

3.    Assistive devices to help to swallow food

With the progression of Parkinson’s, the movement of the jaw could also be impaired, making it harder to consume foods. Assistive devices to help to swallow food and offering liquid foods that are more effortless to take could alleviate the difficulty in eating. Physiotherapy and speech therapy can help to strengthen muscles to complement the use of assistive devices as well.

4.    Changes in Thinking or Memory

Towards late stages, Parkinson’s could affect mental functions, including memory, judgment and focus/concentration. This symptom is often frightening for both caregivers and patients. Symptoms that Parkinson’s is affecting these abilities include hallucinations, sleep disorders, delusions, and frequent episodes of disorientation. It is best to work closely with the doctors to choose the effective dosage of medications to treat these changes. Read more about Parkinson’s Dementia here

Given the progressive nature of Parkinson’s symptoms, another critical caregiving consideration would be to decide on opting for Palliative Care. Palliative Care as an approach,helps improve the quality of life for patients and families dealing with a life-threatening illness. Such care ensures relief from pain and other distressing physical symptoms, psychosocial, and spiritual concerns. It involves medication, diet and nutrition support, speech therapy, occupational therapy, and psychological support etc..Palliative Care is holistic providing a specialist care team of Physiotherapists, Occupational Therapists, speech and language therapists, dieticians, and counselors.

Such care can be given to the patient at home, in a hospital or a care home, depending on the patient’s preferences and the intensity of symptoms, resources available, etc. It is preferable to make this decision along with other close family members to ensure that they are agreeable to this transition. The earlier patients opt for palliative care, easier it becomes to manage symptoms in the final stages of Parkinson’s. Read more about what Palliative care entails here.

While the physical burden of caregiving is immense, there is also a significant emotional toll of Parkinson’s. Caregivers must acknowledge the emotional upheaval caused by the illness to bring about acceptance to deal with the disease.

While it is not easy, it is advisable to discuss the patient’s preferences around end of life before reaching this stage. If not discussed already, it is best to address this while the patient can still communicate his or her wishes. This helps the patient and the caregiver plan for what lies ahead. It also takes away the burden on friends and family to make decisions in emotionally stressful situations when the patient cannot speak for themselves.  Broad things to discuss would be

1.    Personal Preferences

The most empowering and kind gesture to the patient is to let them take decisions in line with their beliefs and preferences

  • Where would they prefer being treated? Would they like to remain home, with children or at a hospital?
  • Who should inform loved ones or children about the patient’s end of life?When and how should they be informed
  • Any members of the family living abroad or in other cities who need to be present for the final days?
  • Any cultural or religious wishes

Having these discussions will ensure that the caregiver can take the right calls in the eventuality that the patient cannot speak or does not have the capacity to communicate their wishes.

2.    Managing Financial Affairs

The family has to be aware of all financial matters, bank accounts, credit cards, taxes, pension, investments, and life insurance details, preferably with a designated person taking ownership. Credentials to access essential documents or files on the computer, nominations in investments, fixed deposit receipts, passports regular payments and subscriptions to be canceled, need to  be passed on to the family members. Ensuring the caregiver is in the knowledge of essential affairs of the patient will ensure that during the bereavement stages, these things are taken care of seamlessly.

3.    Will and Power of Attorney

Drafting a will secures that the patient bequeaths their possessions and properties to the ones they wanted to instead of leaving it to the laws of the land. A power of attorney is also an excellent measure to empower a person trusted by the loved one to make decisions if the patient is unable to make decisions for themselves in the future. It is also advisable to have a known person as an executor of the will who can ensure arbitration in case of any conflicts.

4.    Advanced Medical Directive

Several medical treatments require consent, and in the case, the patient cannot make decisions in the future, the family will need to make difficult choices. By taking advance decisions, patients can specify procedures acceptable and not acceptable in case they are not able to communicate or make decisions in the future. It is particulary important to discuss their views about life support and invasive surgery. Advanced Medical directives are legal in India as per Patient’s Bill of Rights.

Caregivers should remind themselves that they are not alone in this journey. A caregiver could seek support from others who have been on this journey through support groups. Being associated with a community can help cope with active caregiving as well as grief and loss after end of life.Caregivers could participate in support group get-togethers across cities organized by NGOs such as  Parkinson’s Society, India or could also attend regular support groups organized by CaregiverSaathi.

In addition, a caregiver should work on acceptance in solitude where they could practice mindfulness at home through guided meditations and focusing their energies more inward. In case the caregiver identifies depression, irritability etc. beginning to cloud their judgment, they can approach mental health professionals to help cope better.

End-stages of Parkinson’s is also a time to gently say goodbye to loved ones by celebrating their lives and the enriching relationships. A period to let go of grudges, resolve differences, and to express love. While this is a difficult stage, the opportunity to say goodbye eases the caregiver’s journey from grief to acceptance.

It is never easy losing a loved one. Coming to terms with the sense of loss felt when a loved one dies takes time. While some may be in a position to deal with such loss on their own, others might seek help from specialists such as trained bereavement counselors to deal with grief. Remember to stay in touch with close friends and family who have been a part of the caregiving journey to support each other and seek comfort. While the journey post-caregiving is an altogether separate discussion, it is essential that one plans for it and seeks help when needed.

About The Author

Shwetha Sivaraman

“I am a corporate professional turned writer. Forever in love with the written word,  I believe that words are evocative and bring magic to life that remains eternal. A compulsive reader and a travel enthusiast, I love meeting new people and exchanging stories. I believe in living life to the fullest by making every moment count and write about travel and life in my blog BeingMeraklis. “.


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