Come…walk with me for almost a day !!

//Come…walk with me for almost a day !!

 

Come…walk with me in our home for almost a day !!

Sit down and share a day…. in the life of a Carer!

 

Early morning with the cold crisp winter air breezing from the Ocean, I force myself to inhale, slow and deep, and imagine the pure energy flowing through me, enough to help me through the day, until the Home grows heavy with the Elders, breathing softly in a deep sleep tonight.

Some curtains are still drawn, and I am relieved, a little bit of peace still around, some drawn curtains leaves me with a heaviness, and I know of the effort ahead of trying to get them out of bed today. Some are open , and I ‘m delighted to see a fragile body through the window, perhaps a smile, a little wave, as someone recognizes me!

As I punch in the code at the gate, I enter another World!

Uncle G, is relieved to see me! I can see it on his face! But he is unshaven, still in the same clothes for two days now, so I know it is time! He is not going to smile much longer. He has to shower, he has to shave, he has to change into fresh clothes. Only six months ago, this formidable man, was still able to care for himself, but not anymore. And like a lot of our people with Dementia, they do not like water! And with uncle G, it is even worse!

The soft droplets from the shower, physically hurts his skin! After battling and patiently trying to talk him out of his clothes, I have to roll up my pants and take off my shoes, and step into the water first. Only then, sometimes, he will grab my outstretched hand and I am able to get him closer to the water. He will not get under the shower, he is frantic of the soft drops ( I never open the taps all the way) he is close enough for me to wash with the cloth, but I have to be so careful not to do it too hard, for then, he will rush out of my reach, swearing and shouting. I start with his hands. They always say start with the feet, but with him, it doesn’t work. When I start with his hands he feels in control, handling the water, not so sensitive. For some reason his back is so sensitive, as if all his nerves are bare to the touch of my hands, and he screams every time I try to wash or rinse his back. At first I could wash his hair. He was still able to remember the bottle; “Head and Shoulders” (shampoo), but now I have to commit, and wash, although he swears at me, and tries to get out from under the water in my hands, I can only scoop water over his head to rinse. It is seldom properly rinsed, but for now it is ok….

Done! He is relieved, although still fuming! He swears that he will never ever do this again, and I promise him that this is the last time, I am sorry!

When I take him to his room, where he feels safe and warm again, he starts crying. All I can do is take him in my arms, as I try to be strong. But then he says….”Bokkie, I can’t even do this. What is wrong with me?”  I held him, and we stood in each others arms, crying for a life that is no longer there, crying for the formidable professor….no longer.  Later, we walked hand in hand, and he thanked me, and asked God to bless me….

Still with my eyes wet, I knock on Jantje’s door. I know she is still in bed, like every morning. And like every morning I know this is going to be my next battle. She forgets to sleep at night. She will sit on her bed, for hours, just sitting, or she will read a page in one of her books, over and over. So I know when she is laying on her stomach, that it is going to be difficult to get her out and ready for the day. So I go in with a song, or a very cheery voice, just to start lifting her emotions, or maybe mine, as I open her curtains. Some days she has a light in her eyes, and some days they are dull and the confusion is shallow in the blue, turning them grey. After the nights when she stays awake, she will be ready to get up early the next morning, but after a good night’s sleep when she goes to bed early, she is very reluctant to get out of her bed, making desperate plans, getting angry, starting to cry…

She will tell me, she was up already, very early, and had a long walk with the dog, had a shower too. But I can see the shower is dry, and know she hasn’t been out for a long walk. So I distract her by pulling her socks off her feet, trying to show her the sheep in front of her window, thinking the whole time what to do to get her out of her blankets. Some days I will tell her it rained last night, and her blankets are damp, and I am going to hang them out in the sun for her…..so I try and try and try again….  Maybe I am lucky and two hours later she will be in the shower. I learnt that by opening the shower water, I know the chances are good that she might get up, because it worries her if the water goes to waste. Some days it works. Some days she stays….

A short breath.

Next door! My dear aunty Mannee. She looked up as I opened her door and my eyes met her bewildered eyes, huge and wide in her head.  A hug, a kiss….  but then she pushed me away, and started telling me about her wet and dirty clothes!  And if I try to tell her that it is not, it is just cold and clean, and she looks beautiful! I know it is in vain when I see about five pants and tops already on her bed. I took her hands in mine, and helped her to the chair in front of her mirror, gesturing for her to sit down. And then I put my hands over her eyes and told her not to look in the mirror, and only to trust me, because in my eyes she is beautiful! She gave me a little smile….allowing me to do her hair, because our aunty Mannee loves being pretty!

Or lately she wet her bed and her floor. Why? Is the sickness taking it’s toll? Does she have an infection? Always you have to think, you can’t ask them about pain or what is happening, you have to observe and guess and try and think why, why, why?  After a day or so….we realize that it is the ‘toilet!” For no reason she stopped going to the toilet in her room, how can she? It is going to be dirty! So she kept everything in! And only when her bladder exploded, it was in her bed or on her floor!  I tried to reason with her, I took her to her neighbor’s toilet, I took her to the public toilets, nothing persuaded her to use any of it. At night she had to wear a nappy, and she hated it. What to do? And then I came into her room, and asked her if I can use her toilet, and she freaked!  NO! It is going to be dirty! But I ignored her, and I peed in her toilet loud and clear, and I asked her to try after me. It was still not that easy, I had to take her hands and guide her, and I had to flush very quickly before she can see what is in the pot, but about two weeks later, she was able to go by herself!

A breath!

Breakfast time! My Angel Carers got all our residents at the tables, and already we only take shallow breaths. It is busy! We have to think on our feet, help, care, lie, laugh and cry, but eventually all are seated. And now we know, for the next half an hour, they will be feasting! Food they love!! And we love feeding them, because we already walked the walk with someone, not eating anymore, someone not swallowing anymore….

It is icy cold and the fire place is burning orange ambers, and it brings the welcoming soft homeliness in our Home.

The ‘Wanderers’ are on the move. Constantly up and down the passages, only lingering for a short while, observing a bit, hanging on to a cup of warm tea, eating a snack on the move, never sitting down….only late night we will succeed in tucking them into a warm bed…maybe.

Aunty Beautiful is walking up and down, more than usual, looking for her children, wanting to get onto a bus or a train, waiting for her husband. And we know. She is different today. Slightly. And as we check her catheter, we know why. It is blocked and she feels irritated, uncomfortable, maybe sore, but she can’t tell.

I get her into her room onto her bed, where we can quickly flush the catheter. To her, now I am her doctor, and she is in hospital, and we play along! “I am going to give birth soon!” she says, and we get excited with her. “My second baby girl!” To her, she is not the fragile eighty eight year old lady. In her mind, she is the young women giving birth tonight.  And we order room service for her, and we fuffed and kept her in bed, with warm tea and a hot water bottle, until the memory faded with her getting up to wander again.

The day flew to four o’clock and we know, it is going to get busy again. The “Wanderers” pace with more determination, out into the garden, they feel the need to go somewhere. It is that time of the day again, when they’re used to going home after a long day at the office , and how can they stay? So we let them. If they want to go out the security gate, we unlock the door, and follow at a safe distance, and after a short while the agitation becomes less, and when they see a familiar face and the promise of a warm cup of coffee, they follow us “Home”.  This time of day, we keep the energies low in the Home,  we do not want visitors in our Home, we do not want any stimulation other than the routine they are used to by now. At this time of day, no one walks fast, no one talks loud, no one laughs out loud, not even the dishes are rinsed with a sound.

Supper is quiet! You can only hear the cutlery, because the food is good, and they love food!

Bed time! As I walked down the passage with Amelia, I remembered how I had to sing to her every time I had to walk her to her room. Now she will shuffle with me, no longer physically strong, and I have to tuck her in, and still have to tell her that I will be back soon, I am just going to fetch my pajamas, and then she moves up in her bed, and waits for me with a smile…

Dear aunty Anne is sitting alone, calling out “Oh Lord Jesus!” the whole day. Sometimes upsetting the others. But tonight she is quiet, sitting with “her baby” in her arms. I only gave her a gentle hug, and let her be…

As I said good night to some of our people, I might get a kiss or a little hug, or a little smile and a good wish, I leave my Angel Carers with those who do not go to bed at all, or those who only go to bed for a short while.

I leave the Home in their lovable caring hands… and I walk back to my house and with the moon hanging heavy in white over the Ocean, I take a long, long thankful breath…

 

By | 2017-09-27T16:13:59+00:00 July 23rd, 2016|Jura Care Blog|10 Comments

About the Author:

Marlene van Niekerk
Equipped with the most important ingredient required for working in the field of dementia, Marlene has an extremely warm, caring and compassionate heart. Her ever expanding knowledge about dementia and how to care for people living with dementia is both insightful and inspirational. Marlene is Jura Care Village's Managing Director and is involved with many aspects of Jura Care Village's purpose.

10 Comments

  1. Romary Wegerle July 24, 2016 at 1:33 pm - Reply

    Marlene, each of you at Jura Care is a Special Angel and we are grateful for the Love and Care you share. Thank you for sharing your day with us. Love to each of you,
    Romy.

  2. Elain Steinberg July 24, 2016 at 4:20 pm - Reply

    Marlene. KUDUS to you and blessings. New research is showing us that low sugar low fat diet has caused the onslaught on early onset Altheimers and dementia. In South Africa our patients are getting younger and younger. LOW CARB HEALTHY FAT EATING .has reversed this onset or stopped it in it’s stacks by feeding younger patients with avocado, coconut oil and love oil 3 x day. No sugar no fruit and no grains reduces inflammation and diabetes.

  3. Melinda Young July 24, 2016 at 4:58 pm - Reply

    Marlene, you are a special angel.. because I can relate with what you go though. I look after my mom and she had the same symptoms as them.. not wanting to shower, arguing, swearing, not wanting to eat, except for chips and sweets etc, not sleeping properly and wanting to walk to her mom and dad’s house. Mom is 80 now in August and lost my grandfather 26 years ago, my gran 6 1/2 years ago and my dad 7 years ago..Most of the time mom thinks I am one of her sisters or a friend.. I look after mom 24 hrs a day. It is very sad..

  4. Elize Rautenbach July 24, 2016 at 6:24 pm - Reply

    Dear Marlene

    Your post brought tears to my eyes. Thank you very much for sharing it.

    I am so fortunate to have my mother there at Jura Care. I know that she can’t possibly be taken better care of anywhere else than at Jura. A heartfelt thank you to you, Johan, Sister June and everybody else involved. May God’s blessing be on your work there.

    You all are such a blessing in my life. Thank you for what you mean to my mother and to me.

    Kind regards

    Elize Rautenbach

  5. Geraldine Jackson July 24, 2016 at 7:45 pm - Reply

    Thankyou for sharing your incredible journey.Whilst reading your post my heart just broke into so many pieces.Im so grateful I came across this story of yours. I’m also caring for my 82 year old mom.Now I know what to expect and lookout for.Symptoms you mentioned has occured .The do’s and the donts and will ask God to patiently guide me though the tough times.I sometimes burst out crying when I see such a hardworking strong woman changing in a matter of months.
    Kind regards
    Geraldine Jackson

  6. Ronell Boshoff July 24, 2016 at 9:49 pm - Reply

    It is so so painful for me to read this. My mother has Dementia from a younger age under 60. I take care of her for 7 years and it was so so painful some days. It is not a easy road but you learn with time to understand whats happening with them. There were more bad days then happy days. She died two years ago natural causes. Please all of you who take care of youre parents. Love them be patient give them many attention. Take good care of them. I miss my mother so much. Make time to know about dementia

  7. Bev Moseby July 25, 2016 at 7:34 am - Reply

    Heartwarming, touching story…..may God shower U with His love & Compassion as you care for these precious people, struggling with these very debilitating conditions….U too, are an Angel in disguise….beautiful inside & out….💚💛💜💗💟

  8. Anne Holder July 25, 2016 at 10:34 am - Reply

    Marlene I so enjoyed reading your blog, it brought tears to my eyes. Your caring and love is so obvious.
    Carers are special people but the people who are trained to care for dementia patients are even more special, they know how to care for them in a specialized way. Hopefully in the future training will be available for carers at frail care homes, we need more of them. Take care 😀🌻🌻

  9. Rene Brown July 25, 2016 at 12:54 pm - Reply

    God bless you, Marlene! You are a very special and gifted angel.

    I take care of my 90 year old mom who has been afflicted with the disease since the age of 70. Everyday brings new challenges but I love her so much and I pray constantly that God will continue to give me the strength and patience to take good care of her. I have learnt to live in her world which sometimes makes situations a bit easier. Every day is a new day filled with new “adventures”. sometimes tears and humour, too and in spite of her affliction I am so blessed to still have her in my life.

  10. Retha de Bruin July 25, 2016 at 1:13 pm - Reply

    Ai maatjie. My bors pyn van die ingehoue wete dat elkeen van ons net stoffies is. Maak nie saak hoeveel n mens in “mens terme” bereik het nie, ons bly maar soos die groen gras wat in die oggend gesny word,en verdor deur die middag windjie weggewaai word😚.

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