Padraig......My Wife....My Story ..Part 2

Hi, Lyn, Mary, Linda and fellow carers. Sorry I had to dash yesterday. Our Daughter just arrived back after 2 weeks in Spain and came to visit. We'd just received the news that her daughter's (our g'daughter) partner was OK after an air crash in Afghanistan, sadly he's accompanying home, the bodies of two of his friends. I care deeply for our daughter with having two family members likely to land up in a troubled part of the world.
Jean and I have settled into a routine that appears will carry on long into the future. I still just take it hour by hour.
Mary, I'm happy to learn that your finding a little peace at last. The things that use to upset me most were the messages being put out offering help, only to discover they were all smoke and mirrors. Now I expect nothing, but should something good turn up, I appreciate it all the more, especially if it's earned through my own endevours. God willing we'll make it through the next two months to early Feb which will mean a whole year without Jean requiring medical attentsion. Back then was when she last saw a Doctor after she had a fit. It's said, we should count our blessings, well I know we've had more than our fair share to be thankful for. One thing I've learned, is the End, or Final AD stage, as discribed in all I've read, once one enters the stage it need not be the end in months or a year! Jean is living proof of that.
Lyn, like Mary I'm hoping you put sleep and rest at the top of your lists. I've no problem sleeping as I've learned to switch off, once my head hits the pillow with a prayer on my lips.
May your God go with you Padraig

Dear Lyn, Padraig, Mary, and others,
I have been unable to keep up with this forum for several reasons and am happy/sad/dismayed/empathetic/sympathetic/sorry/ to read about new developments.
Padraig, one of your recent posts spoke of living day by day and also of the "end stage" not meaning what it really sounds like. How true! My routine with Mom became very comfortable for both of us, even with the occasional outbursts that someone with a still active, yet confused, but vocal person can do. Dad learned to step aside from what he had trouble dealing with and allow me those responsibilities, while he continued reading to her, holding hands, watching Lawrence Welk and History Channel shows together, accompanying Mom and I on at least one outing per day, helping me tuck her into bed each night, and always telling her how beautiful she was and how much he loved her. Routine was everything and it kept us all busy, yet productive, with Mom's state of mind always being first priority. As for the so called "end stage", there is too much controversy about that. All I can attest to is that Mom died well after her 90th birthday, after being diagnosed with Alzheimer's at age 79. The beginning did start slowly, with her being aware she was forgetting more than usual: "losing bits of my brain every day!" For most of those years her ability to function physically did not alter at all, not really until her last months when she became fatigued easily, started falling occasionally, and had some trouble eating. Mentally she deteriorated by the day, obvious to her family after she was about 83, progressing to the point she was seemingly unaware of much of reality except for what she could see, touch and feel. A week before she died she was still smiling when she would gaze out the window to the mountains, and would get excited to see any kind of dessert! It became increasingly difficult to put together coherent sentences, but I could usually tell where she was going with her story, what she wanted, and what it seemed she was trying to express. Her confusion and the look in her eyes, the frown on her face when she was trying to say something was difficult as she was always so very outspoken. She got to where she did not know my name, nor many others except those from her distant past, but she knew those people that were the ones she could trust and ones that loved her and she in return.. So what was her "end stage"? I never had to take her to the doctor because of her great physical health, but the one doctor she did see predicted she would not live nearly as long as she did, because of the "pattern of the disease." We all learned there is no real pattern. We just enjoy, as you said, each moment, cherish each moment, deal with each new development, and hope tomorrow will bring more of the same, with an eventual hope that their true end will be peaceful, when it is time.

Mary, as I wrote in a previous e-mail, I am so terribly sorry you have to go through all of the heartbreak of an ailing husband but also the pain and frustration of not-so-well-meaning "family" who continue to plague your life with their greed and selfishness. Again, I hope that with the help of the doctors and attorneys that a settlement can be made whereby it is YOU and YOU ONLY who makes the rules! I know you have to be exhausted, mentally strained to the limits, and frustrated at all these setbacks. It sounds as though you know the direction to go in, that you are taking time to exercise, rest a bit, and enjoy YOU.

Lyn, it is troubling to hear of your medical woes of recent. I don't know how you continue to be so productive when dealing with all the physical trials, being a mom, a caretaking daughter, and an employee, AND volunteer. You amaze me all the time with your tenacity and with your upbeat outlook when things are looking bleak. Hopefully you allow yourself time to rest not only your body, but your mind, to find peaceful moments every day, to regenerate your physical and spiritual self. Please take care: I know we are all concerned and want to be kept updated on how you are doing.

Hi Lyn, Mary, Linda and fellow carers. It was nice to get back to normal having our daughter visit yesterday. It's strange how receptive we are to what others say, she said :"Dad I can see you and Mom celebrating your 60th wedding anniversary!" That would be in less than 8 years time. She must have been thinking or wishing, that Now, will last that long, God only knows. One thing I do know, is people don't die of Alzheimer's, but from the effects that flow from the suffer's perception of how they are valued, wanted and loved. Linda so very well discribed it, by the way she cared for her parents. When I reflect on how I was caring for Jean while she was in hospitals and NHs, I'm now aware that we were in our seperate worlds. Me upset at what I was losing while she was confused and lost. Once I entered her disturbed world, I could understand and remove the underlaying causes that brought on depression, agitation and anxiety, which in turn led to loss of appetite, weight loss, pressure sores and other illnesses. All these were being treated with medication, mainly to releave pain. I dispensed with the medication, except for the morphine for relief of pain while it was required. In the past few years we are in tune with each other's feelings, she's aware, that she's my everything. Each morning when I get her up I'm always singing and our daughter tells me, that her children have taught their children the silly songs I thaught them. Do you remember "I climbed up the door, opened the stairs, got into my pyjamas etc."? Thats just one of many songs.
Linda, You should write your book about the years of caregiving for your parents it may inspire other caregivers to keep their loved ones at home.
Lyn, I'm hoping and praying you recover enough to spend this precious time in your Dad's company.
May your God go with you. Padraig

Just a quick replay to that of passing down songs etc. : my mom had a Burl Ives song "turra lurra lurra" that she sang to me every night, several times each night, for as long as I could remember. One Christmas after I was married I received a musical snow globe and lo' and behold: mom had found one with that song! I still play it as a comfort thing. I then sang that same song to my daughter when she was born until she also insisted on hearing it several times before each bedtime. My son didn't want to admit he liked such a "girlie" song, so he would gradually creep into his sister's room and listen and sing along with me, to her. Now he sings it to his daughter and it is more precious than anything I ever ever seen: to see a 6' 6" "many type man" cradling his Kate and singing it to her-) Those memories, traditions etc. are one of the best gifts I think we give our children. Good day to all of you...I am out to shovel off the driveway of the 7-8 inches of beautiful white snow.
LE

Lyn,
Oh yes, another wonderful song that conjures up so many lovely memories of childhood, and then of my own children when they were young. I actually sing that song to myself, as one of many tools in my arsenal of techniques to lower anxiety, and it usually brings a smile
take care,
Linda

Words cannot express my feelings right now G Padraig ..........

I am so bleeding sorry this happened........but DO not lay the blame on yourself ....these things do happen

My only thoughts right now are that that she is going to be okay and that you now have so much more on your plate..........but I know that not matter to you as you love this woman to NO END.........

Post when you can .........
Gentle huggs to G Jean and yourself
Please know you are in my heart thoughts and Prayers...........Always
Butterfly Kisses and
God BLess
Love
LYN

Dear Padraig,
I am unbelievably sorry this happened to Jean, and to you. It sounds as though her fall caused considerable hurt and I pray she is not in too much pain. As we have all shared here before, the pain tolerance/awareness/reaction to pain can change dramatically through the course of Alzheimer's. How hard it is to see your loved one in that kind of shape, and I can only imagine your incredible shock to find what happened in such a short period of time. It is one of those things that happens and in doing so defines the word "accident." There's no blame, just shock and concern.
I am glad the hospital allowed you to stay with Jean. I remember that when I would have to take Dad in to the Emergency Room after a fall usually, the staff learned quickly that I would not be leaving his side at all! And then, as in your case, they were grateful for the help I could provide, obviously knowing that I knew Dad better and how best to comfort him. Getting Jean out of the hospital as quickly as you did was most likely the very best thing you could do: put her back in your care, in her own environment, and in her own bed. It's good to hear you asked for a bit of help, if even for brief periods. I would think it would be reassuring to have someone else check Jean out, administer the drops, and then leave and allow you to do what you do best, which is to take such good care of her. I hope her facial injuries are able to heal, especially under the gifted touch you appear to have with Jean, without the necessity of surgical intervention. We will just hope and pray that won't be necessary.
You, my friend, need to perhaps let the laundry and some tidying up alone for a bit so that you can get the rest and sleep that you have missed and will continue to need plenty of as you care for these new needs of Jean.
I know you will take the very best care of Jean, will make your usual wise decisions and most capably and expertly care for her in every way. You need to remember YOU, though, and get your rest so you can stay as fit and healthy as you are. Best of luck, best wishes for her recovery to be as uneventful as possible,and with good reports to HW when you can that her progress is very good. Take care of both of you. You will be in the thoughts and prayers of many, as will Jean, as she recovers from this setback.
Linda

Hi, Lyn, Mary, Linda and all you very special people. Jean has been making very good progress up to yesterday, when she stopped eating. The only meal she'd had was breakfast. For the rest of the day she slept and in the late afternoon I could not wake her. I couldn't make out her breathing, it was so faint. Her hands were clamy and limp. When I lifted up her eye lid, just a blank stare. She gave me one big scare, until late at night she awoke, kept yawning, her pluse came back stronger, but still wouldn't eat. I managed to get her to drink from a baby bottle, then she was off to sleep again. My sleep was late and restless. At 05.00 hours I managed to give her painkiller medication and she was off to sleep again, allowing me to get on with my morning run. Today she's had breakfast and dinner, looks bright and well, is sleeping now. No more need for Nurses, now that her eyes are back to normal. I'll carry on my own once again.
She has an appointment at the Facial Fracture Clinic for tomorrow morning. I've pointed out (on the phone) to the Clinic that I require to be in attendance with Jean at all times, it appears they've heard of me! I'm hoping, wishing and praying that it all goes well. I must get back to her now.
Thank you all from the bottom of my heart and God bless you.
May your God go with you. Padraig

Dear Padraig

I was so saddened to hear of Jean's fall but reading about her recovery and your attendance at her bedside through all of this has made me smile.  You are the person I always wanted to be with the patients I cared for in the ER.

The most important person in the world should be at your side when you are taken away from your home and into a hospital setting.  You were there, I am so proud of you.  I have always asked my husband to never leave me alone if I am really ill in a hospital.  If he has to leave I have asked him to please leave someone with me so I am not alone with strangers. to me this is so important.

I hope that Jean's appointment with the facial clinic goes well and of course they will let you be with her.  It is her right as a patient to have you with her at all times.

I read your posts and I am amazed by the bond the two of you share.  It is truly a wonderful thing.

"Blessed is the season which engages the whole world in a conspiracy of love!" - Hamilton Wright Mabie

Gentle Hugs

Kitt

 

Hi Lyn, Mary, Linda, Kitt and all you others too many to mention. I've lost track of parts of the past days. I accept that as the brain's way of blotting out painful memories. Monday evening I think was another shock for me, as Jean was very still and I had trouble hearing her breath. Her hands were limp, she was clammy, pulse very weak and I couldn't open her eyes. The lids when lifted showed just a blank stare. She remained like that for about an hour. When drying her hands she slowly came to, her pluse became stronger, she gave a number of mighty yawns and was bright eyed. When this happened before and I found it very scary.
When lifting her into the car for the ride to the clinic, she moaned a little and her head kept falling back. She slept with her mouth open and was snoring the whole journey. At the clinic reception desk I was told to take a seat. There were a large number of folk waiting to be seen and Jean's face was the focus of their attention which got me upset. I'd already phoned and explained our situation the day before and forcibly put my message over, that I was not prepared to hang around waiting while holding Jean's head. It's such a shame that there's so little understanding the condition of patients with AD.
It felt like I was giving some of the Nurses a lesson on how to deal with people in Jean's condition. One was very keen to learn and asked if I would consider writing about the illness! Another asked if I could give talks as she would love to attend. Sadly, much as I'd love to, caring for Jean comes first.
The good news, no fractures. I had to hold her head while a Nurse held her upper lip back in order to have stiches to her gum, she then had a stich in her lip. It's taking a lot more time and patience to feed, give her drinks plus wash and dress her. Feeding her now, reminds me very much of feeding a child, a lot of the food dribbles out of her mouth, it makes me smile and I'm left with a warm feeling.
Almost all the swelling has gone and she's turned a strong shade of yellow down her neck and chest.
Her recovery has been very rapid thanks to all your good wishes and prayers. I'm hoping to get a copy of the photo one of the Nurses took two days after the accident. Within a week I'm expecting to find her back to normal God willing.
Mary, I'm very pleased for you and your husband. As for his children, they are less likely to visit, as time goes by when they discover he fails to recognize who the are. Many people vanish, then repeat the phrase "I want to remember him/her the way they were". When you love someone, it's all the way, not through duty, commitment or the right think to do, but simply, love.
I'd like to write more, but I must close with thanks to you all for your support.
May your God go with you. Padraig

G Padraig
It does not surprise me that you once again were able to share and give help when needed for the PROPER care of G Jean ......( send her a copy of your first book and then this one )

I do agree you would be a fantastic Teacher in this DD and many would benefit from all you have TAUGHT and gotten thru ON YOUR OWN......self Education BUT also I know G Jean is your priority and always has been and will be

I am sure that a room could have been found for you and G Jean til she saw the Doctor instead of her n you having to sit thru that
'DONT they realize she FEELS..........OMG it just frustrates the hades outa me ,,,,,,,,

I am so bleeding sorry all this has happened ............I am though really pleased she is doing lot better and there were no fractures

Hello Padraig, Lyn, Mary and others,
I am relieved to hear that Jean is making progress, that there were no fractures, and that she is at home with she still where she belongs. I pray that her progress continues; under your care it seems unlikely she wouldn't!
Mary, thanks for the update about your increased visiting with your husband. That is wonderful news. I do believe those kids thought they had gotten the best of you and then realized you weren't going to run off by their actions and words. Good for you for hanging in there and being insistent. I know it was very hard for you, but your payoff of visits without all that stress has to be worth it.
Lyn, I haven't read any health updates concerning your most recent bout with pneumonia and am hoping and praying for you also; that you hurry and get over this hurdle!
Fond wishes, prayers, and thoughts of healing and peace to all of you.
Linda

Welcome to everyone who has followed our story. It's with a heavy and aching heart that I report Jean passed away this morning at 05.15 Hrs GMT.
It's been a very long day so far and for now I need to rest, if I can, my soul mate has drifted gently to her maker. I was given an angel to guide me, having grown up without ever experiencing what it felt like to be loved or to love. Now I know her work is done.
Thank you all for your support and may your God go with you. Padraig