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Thursday, November 17, 2011

"Aspiration Pneumonia among patients suffering from a Dementia Syndrome" on “The Indian Caregiver’s Corner”

Testimonies edited with permission of the family caregivers.

“The Indian Caregiver’s Corner” :

This section is made in part, to explain theoretically the different aspects of Alzheimer’s Disease, the patients and caregivers have to face worldwide… like the impairment process, the different disorders: memory, language, organization… changes in personality and behavior…. But also, the impact of the pharmacological and non-pharmacological interventions like socialization, meditation, physical exercise, the caregiver’s role and difficulties encountered in India. 

Readers are invited to enrich this section to make it an experience-based one, a resourceful section for other caregivers to find there helpful tips/ways to cope with the symptoms, the daily care activities and to face specific situations in their local setting, at home, outside, with family, doctors….

Family Caregivers sharing their experiences of Aspirated Pneumonia among patients suffering from a Dementia Syndrome:

"My mother, 64, Late stage AD PATIENT has been suffering from breathing problems and swelling in limbs for a month. We admitted her in a hospital . They found her lungs in bad condition and diagnosed ASPIRATED PNEUMONIA. After 5 days' medication,feeding and chest physiotherapy NO improvement was seen . We spent about 90 thousand rupees there. We requested them to discharge her. After getting discharged from that hospital, we reached home safly by an ambulence.

SURPRISINGLY she was looking relaxed in the van and at home she started giving responses by eyes, moving head a little. She had 200 ml milk and then she slept comfortably. Everyone at home saw the change in her face and in her expressions. In hospital she was tense and somehow worried among the strangers etc. 

Too much saliva/cough is coming out of her mouth. SHE has a feeding tube through nose. She does not have fever. We have bought a NEBULIZER for her and also wish to buy a SUCTION PUMP to clean her mouth full of saliva/cough.

Nos I want to know do dementia/ad patients die of aspirated pneunmonia? WHY, HOW AND WHEN? PLS TELL ME your experiences with feeding tube, P.E.G/P.E.J. Is there any ayurvedik medicine for aspirated pneumonia? How long do such patients live with aspirated pneunomina?"

Reply from Vijaya (family caregiver, Mumbai) on her experience with her Dad :

"Yes Sheikh. This happened to my Dad also. This happens because they lose the ability to swallow (muscles dont swallow correctly to the stomach) very often food goes into the lungs. You know how it hurts when we drink water and it goes down the wrong way. The patient has to cough everytime this happens to bring it out of the lungs.

When this happens repeatedly the body's defence mechanism produces mucus and this fills up parts of the lungs. You can see the shadow on the chest x-ray. In my Dad's case it was treated with antibiotics (intravenous and later oral), nebuliser, mucolite syrup and also with chest physiotherapy. Here the therapist knocks on the chest and back to bring the mucus up and it is aspirated out from the throat with a tube by the nurse. This is because the patient is too weak to cough it out.

My experience with feeding tube - In the hospital they had a nasogastric tube and fed liquid food 100ml every 2 hrs. This resulted in a bloated stomach. I had to argue and plead to get them to reduce it to once in 3 hrs. We were also advised by the GI specialist to have a feeding tube inserted directly into the stomach (surgically done). Came home and researched online. In our case we decided against it.

Swollen limbs is water retention (edema) - can be due to various causes. Important that the cause is known for correct treatment. Do keep asking questions. 
In my Dad's case the veins were very brittle so the IV fluids filled up his arms and they were swollen like rubber gloves filled with water. Doctors said it would go away in a few days but we specifically asked if something could be done for immediate relief. Only then the head nurse asked for glycerine and mangnesium sulphate mixed the two and made bandages over the arms. Over night, the swelling came down. All the water came out through the pores on the skin. 

Discuss the edema with the doctors. They should explain the reasons and the treatment that they are proposing."

Do anything in consultation with qualified doctor / nurse.


Alzheimer's Disease in India :
Thank you so much for sharing your experience with us on our Facebook group. I am sure the other Caregivers facing similar situations there would be very moved by seeing all your efforts in making your ailing relative feel comfortable through the disease.
Indeed, each testimony is important for us because other Family Caregivers in India, may find there the support and relief they needed, benefit of your "advises and tips" and you may even have enlighten their pathway then.
So dear Members and Reader, thank you for bringing hope, by participating even if you don't have a "serious" problem/case but even just feelings/thoughts are worth to share. It is really helping us in raising awareness on this disease, to bring support and knowledge for Dementia Care Management in India.

1 comment:

Flu said...

This "pneumoniae" posting, completely useful..