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Submitted by Maush on 20 September 2018
Mausumi, a dark haired woman on the right with her mother, a person with dementia on the left. Mother is wearing specs and  a bindi on her forehead and you can see the blue and white sari draped around her shoulders

Mausumi Ghosh from Mumbai talks about the travails of taking care of her mother, 77 who suffers from dementia in addition to other conditions like osteosporosis.

My mother is an osteoporosis patient from 2003 when she underwent hip replacement operation in Mumbai. She recovered from the same very well and was mobile and independent till she met with a ‘fall’ at home in 2010 and broke her ‘femur bone’ (left leg). She got herself operated twice in Kolkata in AMRI hospital and both the times the ‘plates’ got dislocated and hence I changed the doctor and hospital both and got her operated in 2010 in Nightingale Nursing Home in Kolkata by Dr Indrajit Sardar. This time the doctor assured me that he will undergo a lenghthier process and make sure to give back the mobility if not 100% at least 60-70%. Hence, my mother got her mobility back after staying for 6 months in the hospital as I did not want to take any more risk of ‘dislocation’ and got her relocated to Mumbai to stay with me. She did get her mobility back but with the help of a ‘walker only’ and a shortened left leg (5 inches).

Gradually the maid started telling me that my mother is hallucinating not only at night but even in the afternoon sometimes. She was not sleeping in the night, and used to tell the maid (the 24 hr maid who stays with her) to open the door as if someone has come, maybe her relatives or brother/sisters. I immediately got her checked up by local physician and he recommended medicines for ‘ Dementia’. Things got better as she started living in the present and there were no more hallucinations for almost 5 years with the same medication.’ From last year the doctor has increased the prescribed dose from 5 mg to 10 mg and I have been told it can go till 20 mg, beyond which the doctors cannot prescribe a higher dose.

When was she diagnosed?

She was diagnosed in 2011

Is there a history of dementia/alzheimer’s in your family?

My maternal uncle (My mother’s elder brother) also suffered from the disease.

What is her present condition?

She had a stroke in 2016 and even after she recovered from that and was back on her ‘walker’ she again deteriorated from last year and has become bedridden now. Her knees have worsened and the physiotherapists have cautioned me that if I force her to walk then she might break her bones again.

Please describe your experience of helping your mother manage dementia?

Initially when I just got her relocated to Mumbai I kept a 24 hour maid from Kolkata so that my mother doesn’t feel left out and can communicate in Bengali as I used to work in an office at that time and could not devote too much time to her. In fact, it is my understanding that once you detect dementia and start giving medicines for the same, often the condition of the person improves and the hallucinations also reduce.

But after she had a stroke 2 years back I decided to keep an ayah/attendant for 12 hours additionally, so that it’s not too much pressure on anyone in managing the day to day activities of my mother.

From 2011-15, with dementia medicines my mother was totally fine except at night, when she would have hallucinations about someone waiting outside the main door of the house. I had to take extra precautions so that the door is kept firmly locked from inside.

Now, I feel she is in her second stage of dementia because I had to increase the dose from 5 mg to 10 mg and I have been told by the doctor that maximum dose is 20 mg and nothing else can be done after that. I am sure higher the dose, the patient becomes quiet gradually and recedes into a slumber mode.

What medications is she on?

Aricep 10 mg
Admenta 10 mg

Post her stroke, she is taking Ecosprin daily and some vitamins

What were some of the challenges you faced while caregiving for your mother and what is your advice to patients who face similar challenges?

The prime challenge is to accept the truth that your mother suffers from dementia, she will gradually go back to her past forgetting the present and maybe someday her own child. The word ‘why’ hovered in my mind for months. Initially without any counseling given by my doctor or without reading in the net I went ahead and tried to ‘correct’ her thoughts and that aggravated the situation more which I later realized is a wrong method from an article on PatientsEngage community. So I have learned never to say to a dementia person that what he or she is saying is Wrong, which is very difficult for the other person to accept but that is the only way of keeping them calm. Also, it is difficult to predict the behaviour of a person with dementia, because there are behavioural changes everyday. So it is difficult for a caregiver to plan out the course of action.

I have gradually found out that I have to keep my patience and have to counsel my maid servants and attendants about the fact that my mother should not be angered at any given point of time.

The challenge the maids/ayahs face is that mother wants to go out always as if the current house is not where she stays and hence she needs to go back to her own house. So I instructed them to say that I will come and get her out of the house, so that my mother is willing to wait for me and hence the topic is addressed and she will keep quiet thereafter, for sometime at least.

Keeping the brain engaged in something other than TV is another challenge and I have got fruitful results out of it. I once bought wool and needles for her to knit a sweater for me. She first refused to hold it saying she does not remember anything; so I said I will teach her and did the same. First week she did just a little but gradually she found interest and completed the same.

I have also introduced her to ‘ludo’ and even the maids play with her in my absence. I made her count the boxes on her own, I made her once play "join the dots and make a box" game with me. Sometimes I read books for her as she refuses to read them herself.

People with dementia gradually become reluctant to do anything. At present she refuses to eat on her own,so we feed her with a spoon now, She also used to enjoy reading the newspaper, which she has given up on totally.

Another challenge I have often seen is my mother’s sodium level going down, even before dementia was detected and that also affects their brain and they start talking nonsense and the telltale sign is sleeping through the day and not eating at all except water or tea.

Have you learnt anything in managing this condition that you wish you knew before?

Yes, I learnt that I should have found out about the condition in detail and should not have tried to correct the wrongs myself which created a lot of stress for me.

Patience in handling a person with dementia is very important. But it is equally important to try out innovative methods to involve the person in various activities so that his/her mind remains occupied as much as possible. 

What kind of specialists do you consult and how often?

Normal general physician if required for other reasons like fever, diarrhea, etc. other than dementia.

You may not need to consult a specialist doctor for dementia very frequently because this condition has no cure and has no upgraded medicines other than the one already prescribed from day 1 which needs to be continued till the end. There may be other medicines in the same group, but not anything that can cure.

Skin allergies have recently also come up for my mother, which maybe early signs for bed sores. For this, I consult the skin doctor.

What resources are available to you in your city to help you in managing the condition?

In India till now we do not have any ‘rehab centres’ like abroad and hence we have no choice other than to depend on local maid and ayahs which means no guarantee of their daily attendance and since most of them are not sufficiently educated, I have to monitor the medicines.

Have you had to make some changes to your mother’s lifestyle or your lifestyle because of her condition?

My mother’s lifestyle has not changed much as such other than her mobility so I procured some stuff like bed stand which allows her to sit on the bed with a back support, table, bed pan, etc

I was unable to manage my office and chores for two households because when you keep your mother in a different apartment you are actually running two households , and hence gave up my job in 2016.

Has it been difficult emotionally to cope with her condition?

Yes.

How has your family supported you in your caregiving efforts?

Yes my husband did support it or else I could not have relocated her from Kolkata to Mumbai. Financially my sister who stays in USA helps me out in this regard and my mother also draws a government pension.

Did you see a counselor for support? Were you offered counselling by doctor?

NO.  I was not offered any counseling by my local doctor. Now sometimes I feel I need to go for some therapy

What was the hardest part of caregiving?

When they don’t listen to you and go on repeating the same sentence again and again

What kept you going?

When she is your mother you don’t need any reason for keeping on going

How has this changed your perspectives in life?

One thing I have learnt is if you don’t take care of yourself, then it eventually becomes difficult not just for yourself, but your family too.

I have now started taking care of my health and going through regular medical check ups so that I don’t face what my mother is facing now.

Recently,I have also started Buddhist chanting to keep myself calm and pray for my mother’s peace.

Read: Self Care: The Not So Selfish Plan