I am caring for my mother-in-law indirectly as I have helpers to care for her on a daily basis.
However, when it comes to decision making for her healthcare needs, I will be the one responsible.My mother, on the other hand, doesn’t stay with me, so I will make sure I telephone her every now and then to check on her.
Although I have a lot of support from my helpers, caring for my mother-in-law can take a toll on me at times. I wished I was given the chance to take a break so that I can unwind and recalibrate my emotions.
A lot of things worry me like what if she fell down and have to be admitted to the hospital? What if she contracted with a viral infection? What if she refused to listen and kept objecting your good intentions? There are a lot of what ifs’ that leads to stressful moments for me.
Speaking from a caregiver experience, I strongly advise caregivers to try to understand the patient as much as possible. Always put yourself in their shoes as the patient might be going through some trauma and feeling useless in his or her immobile condition.
My dad has been living with Parkinson’s disease for more than 6 years now. He was diagnosed during a regular checkup at the Dr’s. Besides Parkinson’s disease, my dad also has heart disease and diabetes.
Although he has Parkinson’s disease, my dad is still very much himself, for example, he is capable of going out to do shopping. However, we do notice that his movements are considerably slower than usual.
The most concerning part of his condition is the medication that he takes to help him. I noticed that it causes illusions due to the side effect of the medicine. My dad complaints of seeing spider webs around his hands and legs, worms wiggling on his body, on the bed and in the cup. As a result, he is reluctant to drink from the cup because the illusions were so real to him. He even resorts to using hot water and fire to try and burn the insects from his hands and legs. So be warned of the side effects from medication! Other than these episodes, my dad’s thinking is normal.
One day, I brought my dad to physiotherapy and I found that most of the movements or exercises were what I have been doing with my early childhood music and movement students. The only difference is that the therapist used counting in whereas I use music in my classes.
Studies have shown that when the elderly listen to music while exercising, it helps them in the following ways: Balance maintenance. Fall risk reduction. Bettered social interaction. Encouraged self-expression. Increased communication. Increased positive emotions. Increased relaxation. Reduced tension and anxiety. Improved memory and recall. Increased awareness. Increased mobility and coordination. Increased overall cognitive abilities, etc. http://www.music2spark.com/2011/11/28/the-elderly-how-music-benefits-their-health/
As a result, I am thinking to have music and movement sessions with our parents, neighbours, and friends with Parkinson’s disease, dementia, disable on the wheelchair or just for family time. Always we talk about parent-child bonding time, as we love our children, but what about parent-child bonding time with our parents?
Having a parent with Parkinson’s, I realize that it is easy for family members to get frustrated around them, especially when they are experiencing the illusions that only they can see. And no matter how many times we explain to him that it is merely a side effect of the medicine, my dad refuses to recognize the facts because the illusions are very real to him. And because Parkinson’s caused his movements to be slower and uncontrolled, my dad will get frustrated of himself.
However, put yourself in their shoes and try to feel their anxiety. My dad feels sad, depressed, and helpless even, because he cannot help himself in his normal capacity and enjoy the freedom that he was so used to having.
I truly believe that we should understand the feelings of someone living with Parkinson’s, let alone any diseases, and learn to empathize their feelings. What we can do and provide as a caregiver to our parents, is our patience and love to them as they had given that to us when we were a child.
Parkinson’s won’t cause someone to be insane, but it is a brain defect that causes their movement to be slow. And when they are acting up from the side effects of medication, treat them with love and respect and try to understand their feelings and thinking.
My two sisters and I are currently taking turns to care for our 80 year old mom who had a fall a month ago. Our mom whilst assisting me to cook suddenly fell and was unconscious for a while. She had this huge bump on her head and had a hairline fracture. She was hospitalized and discharged and she has slowly regained her strength and is able to walk.
Later we found out that due to too many bathroom trips at night caused her to be lack of sleep the day she fell and she did not feel anything as in faint spells or dizziness. It took us all aback as this could happen at any time even while we are with her.
We are planning to take her for leg massages but we find that she needs more care especially in terms of physiotherapy as she needs to relearn how to take time to walk as her pace of walking is sure to cause her to fall again.
Doctors can’t help much as there are no medications for this especially for a fall at our moms age. She used to be a very active person, doing house chores and cooking. We do not want her to do any sort of work in the house but to completely take it easy and just be able to walk around.
My dad was admitted to the hospital last year June due to his sickness and stroke. After he got out from the hospital during October, my family and I decided to take care of him instead of sending him to the care center because my mum knows that not many old folks like to be sent there.
I was working office hours and my mum decided to resign her job just to look after my dad at home. Once I’m back, I will take care of him in the night to make sure he doesn’t fall from his bed and make milk for him and help change his urine tube.
One of the hardest challenge that I find hard to deal with is when bathing my dad. I and my mum will lift him up slowly and with patience help my dad walk step by step to the bathroom.
Another thing that i realize from my dad is he really appreciate what we had done to help him through his difficult life till his last breath. Every moment of help from us doesn’t make us regret of helping my dad through his walk.
When James’s (my son) dad is in the hospital, I was still working and I know when later he discharged, someone has to be there with him and without thinking twice, I immediately resign my work to take care of James’s dad.
When his in the hospital, he felt so down because he doesn’t like the hospital environment. So I told him to get well faster so he can be discharge. Cut the story short, when he was discharge he could hardly walk due to his stroke and is difficult for me and my two boys to assist him in anything like walking.
One thing l really enjoy attending to him specially changing his pampers and bathe him. The challenging part for me is when l want him to walk. His mind might be slow and often lost his memory that’s why whenever he walk l have to repeat n tell him what to do always.
I really love him very much and always tell myself to have the patience and forgiveness towards him. I know he appreciate me helping him and the sacrifice I’ve made, he waited for me to get home from Port Dickson before he went home with the Lord.
I have a 92-year-old grandpa. Being a body builder in his younger days, doing a 10 minutes planking exercises is not an issue for him, unlike some of us young ones here that can’t even do push ups!
It all started when he fell and knock his head, and injured his leg in the process. Because of that, he’s not able to move about as he used too. That’s when we noticed that his mind is different. He began to forget things, and it progressively got worse till he can’t even remember if he has his meals. There are also times when he loses track of time and wakes me up to go for mamak afternoon tea at 3 am in the morning! Because grandpa is up most nights, we have to devise some light exercises to tire him- Sometimes it works, sometimes it doesn’t.
Not long after, he contracted a lung infection due to taking a cold shower at 4 am in the morning. We couldn’t bear to scold him because it’s not his fault. We were at a lost on how to go about caring for him. We have tried explaining things to him, but it does take a lot of patience to get him to understand. And I must admit, it does get on our nerves.
My uncle and aunty bore the brunt of the caregiving. They cleaned him, fed him, and changed his diapers. Lucky for us though, grandpa never threw any tantrums unlike some older people with dementia.
In the end, we had no choice but to send grandpa to a nursing care home so that he can receive round the clock care for his lung infection. But alas he is no longer with us. He passed on 3rd Jan this year.
My caregiving journey took place 20 odd years ago when I became the primary caregiver to my late father who suffered a stroke and became bedridden as a result. He was admitted to the UMMC intensive care unit and was in a comma for 6 months before being discharged to be looked after at home. I recalled at the hospital, I had to step in a couple of times to help with my father’s needs because the nurses were very busy.
For a while back then, we considered putting him in a nursing care home. But having visited a few homes, we decided against it because we discovered that the homes were not on par with what was being advertised. So in the end, we took him home and cared for him ourselves. We employed maids to care for my father when we were out working, however that didn’t go well. The maids ran away, and one even tried to burn my father, because she was frustrated caring for him and lost patience. Understandably, as my father had become almost childlike, having lost his ability to speak or move. He gets very frustrated with himself and has even refused to eat on several occasions. So, I resigned from my job in order to look after my father at home.
Even though there was 5 of us in the family, I had to shoulder most of the caregiving as the task was quite tedious due to my father’s delicate condition – he has a tube running through his nose, needs to be fed, bathe, taken out for fresh air, have physiotherapy to exercise his body and prevent from developing bed sores. I have to suck out the phlegm from his throat to clear his air passageway, and even learn to replace the tube that runs from his nose to his stomach as it costs us RM 300 each time we got a doctor to come to the house to do it. I did not mind doing all this because I have had basic training with St John’s ambulance. Meanwhile, the rest of the family took turns providing support in their own ways, my brothers will come home to read the news to him, and spend countless hours talking with him, my mum will do the cooking, and my sister helps me out now and then, until she suffered a stroke as well during the course of caring for our dad.
Now, we have 2 bedridden patients at home. Suffice to say, it was a testing time for all of us. My mum was at lost at what to do. But still, we soldiered on and eventually my sister recovered enough to be able to sit up on her own. Not long after that, our father passed away at the age of 88 years old, 2 years and 8 months after he suffered the stroke. I think he held on longer because he wanted to make sure that our sister was ok before he passed.
Caregiving definitely is tough and can take a toll on an individual as well as family members. Had I been any older, I am now in my 60s, I do not think I would be able to do all the tasks that I have done for my father. That said, I am very proud to be able to care for my father in his time of need. As a child, I have always looked up at him. He was an amazing man, who is able to looked after and provide for the entire family.
My advice to other caregivers out there, give more love and care to the person you are caring for. Learn to understand and see things from their perspective. Try to understand what is the cause of the irritation and do your best to calm them down. In the end, all they seek is your love and your attention.
The Mother In Law
It was in mid 2009 that my Mother In law (MIL) at the age of 74 arrived at our house to stay in our guest room for supposedly 3 weeks as my Sister In Law (SIL) who is the main carer is going for a holiday overseas. My MIL has visited on and off but no more than a week and she was in good condition those times. Our relationship was friendly and good but not close like mother-daughter. She is a distant MIL and we see each other 2 to 3 times a year only, even though she is nearby in Melaka.
She was to stay for 6 months. She was operated on a few months ago as she broke her upper leg bone when she fell from a reclining chair she was sitting on. She has very bad osteoporosis and a slight fall broke her leg bone. Before that she broke her hipbone and had already been operated on a few years ago. She is also diabetic with high blood pressure and needs to check her sugar level every morning. She needs medication and I am glad that she is capable of taking all the pills herself.
My SIL briefed me on her post-operative wound that has difficulty healing and that I had to wash it daily and dress it. I had been trained in first aid and it did not look good. The wound was almost 5cm long and 2cm wide and 1.5cm deep and I could see a bit of bone there. It was also grey in colour, not a healthy colour for a wound. I knew I had to do something about it!
I checked with my neighbourhood doctor and lucky for me, he had experience dealing with wounds in diabetic patients. He informed me he started this treatment years ago! The grey colour means the flesh was ‘dead’. A normal wound should be pink. The doctor had to remove the upper dead flesh to reveal new flesh so that it can grow. I had to send her for dressing every night, and it cost RM30 each time.
These nightly dressings went on for 3 months. Most nights we go at 9.30pm after dinner and finished by 11.00pm. There was always a long queue to see the doctor. I was so relieved when one day, the doctor said we could go every alternate day then weekly as the wound healed and became smaller. (It was tiring as I had to wake up at 6am every morning but I tried not to show it). By then, I was able to clean the wound for her as taught by the doctor who is now a family friend as well. He also taught me to make a mixture of honey and fine sugar and put in into the wound after cleaning and then cover it up. That was what we used for 6 months and she stayed for 6 months until the wound became smaller and new flesh and skin started to grow. She later had surgery to close the hole.
She had to keep the dressing dry during her shower and we wrapped it with a plastic covering during shower. Fortunately, I had a full time maid at home to supervise her all the time. The maid was given instructions on what to cook for her meals. MIL was also able to supervise the maid when cooking! My MIL has a sweet tooth and she cant resist sweet foods. We had to hide all sweet foods if not she will eat them and my husband will reprimand her!
During her stay with me, I learnt that we need to be gentle and treat her with tender loving care. She is very sensitive even if she doesn’t show it. She feels very helpless even doing simple things as she is now slow and her motor skills are not that good. From my observations, she seldom asks for help unless she really cannot do the tasks. I also found out that she still wants to look presentable and nice. They should be given opportunity to dress up and look good. I did a manicure and pedicure for her and she was very happy. Those days I was too busy to even go for a manicure myself! I am fortunate as she is still mobile and can be considered independent.
I tried to spend as much time talking to her as possible as especially during the weekends, as I realized that she needs company and may feel lonely. I am glad she stayed with us as it gave me an opportunity to let my children see how we care for the old folks. She shared some recipes with me and gave me good advice on how to cook certain dishes. She was cooking for my SIL’s family and helping to watch over the grandchildren until now. She also came to help me with my children when my maid ran away 18 yrs ago. I also learned a lot about my husband and what antics he was up to when he was young!! Haha!
She is now 82 years old and is even slower these days. Recently she came to stay for month. She can still wash her own clothes and do simple chores like making her own drink and sandwich. She can still use the toilet independently but we have advised her not to lock the door in case of accidents. She is getting weaker and needs a walking stick but cannot walk far. My MIL has a sense of pride and does not like to sit in the wheelchair but it cannot be avoided anymore. I have advised her to take the wheelchair if we need to walk longer distances, as it will be disastrous for her if she falls again. She also needs someone to hold her hands when going up and down the steps as she has no strength to do it independently anymore. I have been encouraging my children to wait for her, hold her hand or arm when walking and to push her if she decides to take the wheelchair. She is very happy about that and tells other relatives.
We need to show more care and love for the Senior Citizens and make them feel comfortable and happy. They get easily hurt by unkind remarks but may try to hide their feelings and try not to look bothered by the remarks. I have noticed this behavior by my MIL. We must be careful with our words. The Seniors have a sense of pride and will still try to be independent as long as they can. No matter how tired we are, we must not make them feel that they are a burden to us. We have to give them due respect and preserve their dignity. Show that we do care and love them. After all they don’t have many more years with us, make them happy!
We are making it a point to visit her more often as we have more time now that my husband has retired. I hope and pray we have done our best for my MIL and she is happy with us.
My mum is very independent and takes care of herself, from taking her medicines to doing her own exercises, until last year, she had a mild stroke. She is still able to walk and move slowly. She was advised to use a walking stick by her doctor, but she is so stubborn and refuses to use it. She even had two falls because of that, however, it was nothing serious because our family members were close by and they manage to rush her to the hospital. My mother also has neurologic problems and she gets massive headaches. She suffers a lot of pain at that time. We have taken her for treatments and she has received medications for her pain to be controlled. My mother is generally not that hard to take care of as she is very independent and we have a live in maid to look into her needs when my family is not around.
Being a single parent is not easy. Being the primary caregiver to 2 parents with histories of multiple conditions and illnesses makes it infinitely difficult. With myriad inflictions on the body such as cancer, heart, bone, skin, brain, plus end-of-term conditions, it sometimes felt like a life sentence with no end in sight.
That’s been my role most of the last 2 decades. I had a reasonable support network with friends, family and even staff chipping in at different points in time. But it was unfair to continually expect help from the same sources. I didn’t want to become the unwanted plea for help, the dreaded midnight phone call. So I took on most of the duties myself.
The hardest part wasn’t physical; it was the mental toll. Psychologically, I turned inward and sometimes became obstinate and temperamental.
Lashing out at the people closest to you is the worst thing to do, but it happens. Expecting understanding at all times is unfair and will be unrewarded. And I wasn’t talking about my parents – it was me.
My grandparents lived with us throughout their lives. Both were able bodied and there wasn’t really any need to look after them per se. My grandad was a stroke victim that left him paralyzed on the right side of his body. But he was an independent man. He went out and did things on his own. So for many years there wasn’t much to worry about.
We had a dependable maid then but after she had to go back, was when things started to really get difficult. We could not leave two elderly at home with no one to keep an eye on them. Their routine was very simple but everyone fears the ‘What if’. We managed for a bit then my grandad started to fall sick. He needed care most of the day as he was too weak to move around on his own. We still hadn’t gotten another maid by then.
It was hard looking for a day time nurse/carer. We didn’t even know where to start looking for one. We called around and asked but no one we knew was in contact with anyone in the medical field. So even looking for a retired nurse was like looking for a needle in a haystack. We learned on our own how to care for my grandad as he got weaker and was bedridden. Back then you tube wasn’t filled with this much information yet. So we literally just learned on our own how to move him into comfortable positions, for showers, ensuring he didn’t get diaper or bed sores etc… With a website like this, it would have been god sent back then. To be able to reach out to others for sourcing information, exchange of experiences and be able to get connected to reliable and trusted medical advice.
This is a story of my late Godfather who was diagnosed from started to be the initial stages of prostate cancer which ended with a dreadful stage 4 brain cancer.
Being the man of the house and the pillar of the family, my godfather kept his suffering to himself and ignored the symptoms which lead the cancer to spread wildly within the span of 6 months.
By the time he was diagnosed with brain cancer, he was getting mild seizure attacks every hour or so at only certain part of the body and it gradually worsen to the entire body at every minute. There were sleepless nights where we stayed up all night by his side just providing comfort during the seizure attacks. The other symptoms were losing the control of pass motion and appetite to eat.
The challengers faced looking after my godfather was the fact that he was reluctant to use diapers which led to changing numerous bed sheets and the communication with him became lesser each day as he lost the ability to pronounce words. We never knew what he wanted, in terms of what food he craved, the thirst for water or even if he was suffering from the pain. He spent his last week on his dying bed just resting and sleeping. He passed on peacefully by taking his last breath after 16 hours of sleep.
This was 6 years ago, yet the respect for my godfather still remains firmly in my family.
My care giving story started in July 2014 when my mother who was an independent person riding herself in her independence slowly stretched into the start of dementia. Forgetting to take medicines, to eat was the start.
I was caught unaware and not expecting this sudden change. She had forgotten to eat and take her medicines. Her blood sugar level shot so high the machine just read HI too high to show a number.
She was warded for 2weeks when I took her home she could not walk had to go on wheelchair, a catheter was put, her normal diabetes with tablets changed to insulin and she slipped in and out of the start of dementia.
My world changed my mother’s world changed too. It was the start of a new life for me my mother my family. Everyone had to adjust and change too.
It was tough for me as being her like this and seeing the changes physically mentally and emotionally in my mother was difficult to accept.
I had to learn how to put an insulin jab, how to change a urine bag. I had to care for her like a child. She could not be left alone. She could not do anything for herself.
It stressed me physically and mentally and emotionally too. I was so exhausted as I am an only child I had no siblings to share my responsibility with. I had no one to relieve me. I too would get angry with my mother at times.
There was so much of adjustment to go through. It’s was a hard journey.
The stress caused me to suffer in Dec 2017 about 5 months after my mother had been warded I fell sick. I who had menopause for 2years went through bleeding did an endoscopy and was told it was stress.
I came out of that and began to deal with my mom and my mother’s situation differently. I started to not get upset always it was tough but also realised my mother was also in her own mind confused too. She could not comprehend the changes. Dementia does that as you forget slowly.
She is still here my mother but now I have her in a home. But I take care of everything for her still her hospital visit, her medicine monitoring etc.
She is 89 today she even forgets conversation we have in a span of 10mins but SHE HAS NOT FORGOTTEN ME YET.
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