A time to reflect

[joyportsmouth]

Dear Padraig
Im new to all this as my mum has just gone into residental care, but your post brought tears to my eyes,you could so easily have left Jean in a care home. You truly are an amazing man and your wife {and children} are so lucky to have you.
I love my mum of course but i couldnt do what you are doing,i really wish i could.
Your photos are lovely,and im sure you give inspiration to all the full time carers who read this.

Love to you and your family

joy

 

[Lonestray]

The photos

Hi, you so very kind people. The two photos speak for themselves, but let me add more info. The first one taken in the NH, she's holding Ellie, a few days old, it's our eldest grandson's child. The child has Muscular Dyystrophy, the Mother, his wife is a carrier, which means she will be a carrier.
The second photo is a year later and Ellie is held by our daughter, the child's Nan. You may notice she has a defect in her right hand, just one thumb the other fingers are just small stumps. She attends full time school now as she is almost five. Of all the 13 grandchildren and greatgrand children, she stands out as the brightest ray of sunshine, just thinking of her makes me chuckel. As soon as she could walk she kept sneaking up to Jean and kissing her on the arm and saying "I kissed great Nan". She and her Dad must miss each other so ver much, him serving in Afghanistan and her to be an only child as boys have a poor quality of life which is shortened with the disease.

Am looking forward to seeing her next week as she'll be with our daughter for a few days visit.
Jean must have known it was April Fools day as she left me a urine sample yesterday I've been waiting for a month. Hope the hospital don't think it's a joke.

Thank you all for your very nice comments. I wish you well and God bless.
Padraig

 

[Skye]

Hi Padraig

What a little charmer Ellie is. Children like her are so special, and she must bring a ray of sunshine into Jean's day.

Congratulations on the urine sample!

Love

 

[Lonestray]

Looking back

Hi Fellow carers. If there's one thing I acted on which turned things around when Jean was at deaths door was a thing simple. To get her to close her mouth. During those dark days I noticed her head always fell back and continued to do so long after when I had her in the W/chair. My reasoning was her mouth and throat became dry resulting in her breathing anything that was in the air, and God only knows what was in the air in the NH! They'd never brushed her teeth.

I took to placing her on her side with two pillows under her head, pulled back at a slant behind her head with a cushion beneath, to stop her head going back. In addition I placed a small cusion between her legs.

This pratice I continue to this day. Once I managed to work on her mouth, teeth and gums her eating and drinking improved. Now she drinks two cupfulls of water each morning before I brush her teeth and she likes having her tongue brushed. It took me a while to think about the water, because in the begining she would eat her breakfast, and later throw it all back up. I'd had trouble getting her to spit out the toothpaste and the rinse from her mouth.

I'm pleased to say I believe that was the start of her recovery. With proper nurishment, doing away with all the drugs she was having in the NH and most of all treating the real illness, the mind with real TLC, not PLC I can see she's content and healthy and looks like she'll be with me for years yet!

When I look back on how I felt compared to when she was supposedly in other peoples care at a NH which I was involved each day for eight hrs, I'm overjoyed. Now the weather is better I'm in great shape and enjoying my morning runs and taking her out for strools. I hope this is of some help to others.

I'm hoping to give my perspective as a stranger in a strange world, on life and time in another post, till then I wish you well. Padraig

 

[Grannie G]

Dear Padraig,
You have certainly given me food for thought, regarding the placing of pillows, to help breathing through the nose, instead of the mouth.
Your posts are always so considered and thoughtful.
Looking forward to reading your perspective on a stranger in a strange world, and anything else you may wish to share.
With love

 

[Skye]

Padraig, thank you for a very helpful post. It makes so much sense that keeping the mouth moist and healthy will make feeding so much easier. I always wake with a dry mouth, and can't do anything till I've had a long drink of water.

It's so obvious when it's pointed out, but so easy to miss.

Thank you so much.

Love,

 

[Nutty Nan]

Thank you!

Dear Padraig,
Just simply "thank you and God bless!"
(Too many thoughts and emotions to express them eloquently ..... perhaps one day, I'll be able to think and write clearly ....)

 

[DaughterN]

I can feel your pain

It is some time since I last posted, but when one decides to care 24/7 365 days each minuet counts.
Today it's four years since I removed my wife Jean from the NH which proved torment for both her and I.
Ther first seven years of her illness I managed by learning as the illness progressed.

The attempts to go 'home', her being late for school, picking imaginary specks from clothing and carpet. Seeing people I couldn't, afraid to walk down stairs. Finding coffee in the kettle when pouring to make tea. When looking for a pair of my V-fronts from a pack of four, found her wearing all four! stopping her driving. Double incontinent in first five years. Shortly before her accident I had to call out the police help find her, when we did it was dusk, she was in woodland holding on to a tree for dear life!

From the time of her fall which resulted in a broken arm and dislocated shoulder my life became hell. The two hospitals, respite, home, one NH then another NH all in a matter of six weeks.

At the final NH I cared for her eight hrs a day. When I saw she was giving up I sold up and bought a smaller house and took her home. By then she was very far gone, a bag of bones with pressure sores.

After all the bad experiences I decided to take full control of her care. The first six months were touch and go, four times I expected to lose her. Her teeth had not been cared for, she had mouth thrush and had to have a moist sponge on a stick to wet her mouth and had trouble with her throat.

Today she is the picture of health, though now a baby she is far easier to care for. She has all the traits of a child, yerterday when I lifted her into her chair for her lunch I went to kiss her and she opened her mouth as if to eat my nose!

I phoned that NH today to tell them my wife was doing very well thank you. I couldn't get someone who could speak English, ring a bell? all new staff! Well it is four years on.
At long last someone is interested in us, a Psychologist wishes to interview me this week, lets hope he learns how I turned things around.
It can be a little lonley at times but then I've so much going for me, like I'm fit and there's no generation gap, we both know what the '30s and 40's were like.
Wish I could show two photos of Jean, one at the NH, one a year later, they say it all. Sorry for such a long post, but then there's so much more to say. It would be nice to pass on useful tips I've learned along the way.
Hang in there fellow carers and God bless. Padraig

I just made a post about my late mother (Irene)a few days ago here called the"The end of a long journey". I also watched her become a mere shell of herself...just like a toddler or baby in the end as you said. I thought of my mother as a poor wounded little baby bird at times. She needed help with every aspect of living. I sadly lost her 2/17/07...My post describes what I went through in the end which seemed to come as a surprise to me for some reason I guess I wanted to block it out and think the day would never come...I became very good at blocking. My mother was my second parent to fall victim to this disease. I pray that you find the strength...it is so difficult to endure. I think my posts delivers the anquish and pain we feel for our Dear Loved Ones and our frantic call for help. Sadly I reached the end of my caring journey in spite of all that I did. and I fought a long hard battle with her...the right meds, getting medicare here in the US to pay for a hospital bed and Hoyer lift and all the essentials I needed for good home care. I did not do it alone, I was fortunate to have a very good loving woman help Mom through her journey. I thought you might like to see her picture just taken a year ago on her 85th Birthday. I saw your wifes and she certainly looks lovely and well taken care of. You should be ever so proud. I felt proud of the care we gave my mother in her own home for the 5 years of her journey. In the end it gave me peace of mind knowing I did all I could do. I miss her so much and feel lost without her here. I wanted her here but she had to go.
My blessings for you and wife and family. I still pray for miracles...
DaughterN (Noreen)

 

[Lonestray]

Psychologist's visit

Had an interesting visit to-day plus a phone call yesterday from a PCN saying could she arrange a visit. When asked what for: "To see your wife". still what for: " To have a chat" I told her that would be great as I haven't had a word out of her in years except once. I wondered why suddenly people were wanting to visit us after all this time, I'm told they've got a team togeather. Four years seems a long time to get a team up, seeing there's only me, the goal-keeper in my team.
The Psychologist wanted to find out why I removed Jean form the NH 4 yrs ago. After my experiences with the place I felt it was akin to placing her in a prison, so far from any where. It was my view the country moved too slowly, they put Poorhouses, Workhouses and Orphanages in places out of sight and out of mind.
Asked for the solution, I suggested there should be small units in each community for Dementia patients. This would serve to make them feel at home in their area and nearer to friends and family. When he said it would cost a fortune I pointed out the Government were talking of charging for miles driven, what about the cost of supplies, staff, patients, relatives, ambulances,etc etc pollution and the stress and ill health caused to relatives and loved ones by long journeys. It would be intersting to know how much it cost to the NHS in loss of work hours and sickness caused.
We covered many other things and as he left: "Did you ever think of going into politics" I told him he must be joking, to which he replied: "Your a man of vision!"
Just common sense? Padraig

 

[sue38]

There is an interesting article on the AS home page detailing a recent survey about the cost of caring for AD sufferers and how much carers save the government by caring for their loved ones. If this works.. the link is

http://www.alzheimers.org.uk/News_and_Campaigns/News/270207dementia_uk.htm

Sue

 

[Lonestray]

A big thanks

Noreen, I'm very sorry to be so late with this post. What a beauitful insight to such warm love and care that existed between you and your Mama. When I saw the above photo I could see not a person, weathered by time but underneath a beautiful young girl. It wasn't till the following day did I read your origonal post with the picture of her aged 20 I was not surprised at her beauty.

Your account has a deep and moving effect on me by showing me what it means to love and be loved by a parent. May I therefore thank you for such a vivid insight. Better late than never.

In the earlier days of my relationship with Jean I recall trying to get her to visit her granma saying how lucky she was to have one. When she asked me if I'd anyone I replied "No, but then I can't imagine the hurt and pain must be like when you lose a parent, I'll never have to experience that." At that time I was totaly emotionaly barren, and had never cried.

Jean lost both her parents during the following years I comforted her the best I knew how, but my experiences of death were limited to only two children in the Institutions. One I was envious of because he was going to Heavan, the other was at a hell hole of a place, and knew he was better off dead, now I never forget him and pray for him.

It took the death of our youngest daughter Karen, for me to experience crying for the first time. To try and escape this strange pain and hurt I daily ran up and down hills and sand dunes till I dropped crying.

Noreen, thank you for giving me a wonderful insight to the love of a daughter for her Mama, you've filled a blank in my life.
Your Mama's legacy to you are her genes and the beauty in your soul, plus your ability to spread it. She made you a very special person and will always be part of you. Please God your pain will ease with time. Padraig

 

[Lonestray]

Incontinent pads

When I now reflect on how hospitals and NHs padded Jean up, I'm surpried how few knew how best to place them. At the NH I ask myself could it be they used the cheapest kind?
When I visited her at one hospital she was sat asleep ( only a month later did I discover she was drugged up) in a chair with urine dripping on to the floor. At the NH her clothes always appeared wet.

Once I got her home I discovered they were supplied free (I'd been buying them) I therefore asked for Super Tena they have what looks like eight rain drops, 7 are dark blue with one clear. I take it to understand the degree of absorbency. 8 dark blue would be the highest. Night time I use the ones with fastners on the side.

At the time I pointed out it was false economics to use cheaper ones like the NH, as it meant more washing to be done. Freshly washed clothes and a wet cushion cover on the wheelchair, plus accidents on the bed soon made me learn to place the pads on correctly. That is to say I make sure the the plastic edges all the way around the pad are flush to the skin, result less washing. I also lay pads accross the bed for her to lay on and one on the pillow.
Hope this will be of help, but I expect the girls will already know.
Maybe it'll be of help to the men! Padraig