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

Please please let us know how you make out and how YOU are doing
We are all here and care for you Mary.....
God Bless

Luvs
LYN

Dear Lyn, Padraig, Linda and all,
Thanks, as always, for your most helpful responses. Today at noon I meet with the lawyer and hope to come to some resolution of this ongoing problem. I'll let you know what she has to say. In the meantime, I hold your words and prayers close to my heart and feel strengthened.
Love,
Mary

Mary,
I have little to offer that the others haven't already, except to say that when I got an attorney I trusted and respected in my corner everything started to go much smoother. Although there was not nearly as much animosity between the three daughters (me as the middle one), there was still enough to cause some very uncomfrotable, unsettling and distressing times. When one of us, which was me, was given the informal authority by Dad to handle the decisions and finances, my two sisters found several ways to complicate and argue over even small decisions, not to mention the ones that really mattered. Neither of those two wanted to give up their time to do all the caregiving as I was doing, and in fact they only rarely gave me a short and fractured break in over 3 years of full time care. When they attempted to do what I was doing on their own and realized they couldn't, it didn't have the effect on them I thought it would. I thought they would realize that being alone and caring alone for two 90 year old parents, with Alzheimer's and chronic heart problems, was difficult to say the least and would make them ease up on their petty demands and allow me to do my best without any negative interference. It wasn't to happen that way. I sought out a family friend who was a lawyer, spoke to him briefly about the situation and he then went into fast gear getting everything set up so that there would be no question as to who had the authority to do what. Within a few short weeks he had papers drawn up, Dad had looked at them and signed them while still of a sound mind, and the copies were sent to my sisters. This included a new will, a Durable Power of Attorney, an Advanced Directive for medical care, and all finacial papers put into my name only. Everything was clear: who could visit, whose permission was required for any visit, a ban on all efforts to get Dad to sign anything that wasn't put into the papers just signed, definite "game rules." They didn't like it at all, but the paper work was legal and there was no argument to make. It seemed harsh. Being family I had hoped it could be taken care of in a civil manner at the very least. Unfortunately, sometimes this kind of situation brings out the worst in some people and their greed can get the best of them. It was absolutely necessary, though, because the tension they brought with them when they came to visit, their less than pure motives, and the general air of distrust and anger was upsetting to everyone, especially Mom who quietly sat and absorbed all that was going on. Though she probably didn't understand all that was happening, she could still read people's faces and could tell by their voices when there was anger or any kind of disagreement. Her anxiety level would rise and with that would come a host of other problems that were so hard to have to see her try to deal with. I wanted their last years in their home to be as happy and as carefree as possible, surrounded with love and support. That is what all the legal papers did for me. With even the burial instructions clear, the wishes documented to stay and live out their last days in their home as opposed to being put in assisted living, there were few things that could be argued. After they passed away, the paperwork served as a clear path to cover any and all bases, leaving me executor of the estate with specific instructions and timelines. Feelings may have been hurt and loyalities tested, but it wasn't their feelings I was particularly worried about protecting. It was done for Mom and Dad, who deserved the peace that came with the kind and thoughtful and thorough intervention of a lawyer. I do not regret doing what I did even though it will take some time to rebuild the same kind of relationship with my sisters that we had before I was put in charge of everything. But the end result was all that mattered and the peace we were able to live in after all that was put to rest via the lawyer made for more lovely and quality time for my mom and dad. They both had something to smile about even days before they died because life was peaceful. It shouldn't be too much to ask for and I knew they deserved it. Good luck, Mary, and I am glad to hear you have a good lawyer to guide you through this process. I hope you will have a good outcome as I did. Blessings, Linda

Hi Lyn, Mary, Linda and fellow carers. How do many of us become carergivers and how do we learn? I ask this question because I understand that the staff in NHs are trained to become qualified for the job. Like most things in my life I learned by observation and attempting to understand what we perceive as unreasonable behavour. Now I'm left wondering where the professionals learned their trade. It would be interesting to know, how many did hands on caring for a loved one?
It's my opinion that best practice would be enhanced by the experts if they co-opted the caregiver's input when dealing with a patient.
Had this been the case with Jean and I, she would not have almost died. At no stage was she given drugs for Alz. Unknown to me she was pumped full of drugs at the NH. Only when I decided to take her home did it transpire that the drugs were for treating avoidable causes. Once home I decided to stop medication except for pain relief. It resulted in her having the shakes for a few days. Now she's had no medication for years, not even for 'Epilepsy'.
Her last fit was early Feb this year!
Though no one appears interested in our case here, it's good to know I can share my experiences through Healingwell.

Mary, I hope things have improved for you. This may be of interest to you. When I was assigned the task of overall control of a facility in the Middle East, I brought in many changes.
One was to introduce a suggestion and complaints book in the dining room. My Director thought is a bad idea. It proved very useful, one person who wrote very rude remarks. My catering supervisor was very upset and was surprised that I was so very happy. The President of the company on a visit, happened to look at the entries. He was outraged to read that entry. Need I tell you what happened with that chap?

Lyn, it's good to learn that your brother, who's in good health is learning what caregiving entails. I hope he now thinks you're the best thing since sliced bread! God willing you'll recover soon.
Linda, Wonderful of you to pass on your first hand experiences to Mary. Only when one has been there can they feel the pain and all that goes with it. Best of all, you knowing you did the correct thing all round.
May your God go with you. Padraig

Hey Sis
I love your post
I am glad you came over to chat with us ........

G Padraig does have his great advice.........

Will yak at ya all later am just getting in door and need to check threads lol
Loves
Butterfly Kisses and God Bless
Lyn
SIS

You bring joy to my heart and always a smile to these tired old ladies eyes and I am so happy you are part of us here G Padraig ........

Your way of living and wonder gives us all hope .........thru a childs eyes and heart

Butterfly Kisses
God Bless
Luvs
LYN

Dear Lyn, Padraig, Linda and others,

This is a brief summary; I'm fair flummoxed with all the comings and goings.

Attorney says family has no legal power, and they are about to find that out:

* Hire a caretaker to make a once-monthly check of husband's summer cottage. This is necessary for insurance purposes. Have caretaker change all locks on all doors and only you and he are to have keys. His children are not to be allowed to enter or occupy the house, even if they have permission from your husband. He is not longer medically capable of making good judgments, and that is what we, holding joint power-of-attorney, are to do for him. P.S. DONE.
He could live for years, and it may be necessary to sell this summer property in the future, which we have the legal right to do, in order to provide care for him. In the meantime, we need to safeguard his assets.

*No gifts of money, Christmas or otherwise, may be given to his children by either of us. We are there to take care of your husband and his assets: that is our mandate, and it would be illegal if we were to do otherwise by giving money to his children.

* Your husband gave us the power-of attorney because he trusts us. He didn't give it to any of them: he doesn't trust them.

*His children don't know that they have got to you, but that's what they want to do, make your life miserable; they are not nice people. Don't respond to them other than to say, "You can speak to my lawyer about it." Sooner or later, they are going to realize that they have no power medically or legally, that we hold all the power.

* Ex-wife should not be in the picture. Tell the facility that health advisors have instructed us not to allow the ex-wife to visit, nor is your husband to be released under his children's care to visit in her home. All questions are to be addressed to me (lawyer). P.S. DONE. But facility says they will not be responsible if they can't always do it. I told them to do their best.

Now all I have to do is be prepared to take the verbal abuse.
Also, I have reduced the credit limit on his Master Card to $1000.00; he has one check in his wallet for an account that has approx. $5000.00 in it. (It makes him feel better to have these two items in his wallet, but at least I've reduced the possible financial loss.)

All for now. Thanks for prayers. Need them.

Mary

Hi Lyn, Mary, Linda, and fellow carers. Of late I dectect a slow fading of the love light in Jean's eyes. There are periods of blankness, then, what I read to be longer periods of clear recogition. Over the years I've noticed these changes are a forewarning of things to come. Not unlike the first signs of speech loss, when 'the words wont come out properly', Jean's statment. It's a warning now for me to cherish the love light while it lasts.
Mary, I note you write, you now have to be prepared to take verbal abuse. I'd be inclined to smile and welcome as much abuse as possible while recording it on a miniature tape.
You'd have a strong case for a restraining order, or of harassment. It might be worth your while considering a miniature video camera! You need all the protection you require during this period in your life. I pray that things will settle down and your left in peace.
Lyn, I see your back on the boards, does it mean your feeling better? You may still have a long journey down the Alz road in front of you. Keep well and always look on the bright side of life! Good luck and God bless.
May your God go with you. Padraig

Hi Lyn, Mary, Linda and fellow carers.
I've tried to post two days ago, but when I keyed submit, I was asked to log in! I'm hoping this time it's OK.
With reference to Jean's hands, the left is OK and does not turn in now. She's still incapable of using it, no co-ordination, I have to place her hand and fingers around things. She'll grasp at my clothing, the towel, her clothing while I'm dressing her, just like a child. Her right hand which was damaged in the fall six years ago, is improved but it still tends to turn inward. I have to open her fingers, to place the sponge I made in her hand. It's a pity the Surgeon who inspected it six years ago, though it not worth the effort to operate, in order to straighten the two fingers. He implied she hadn't long to live! She is so very stiff, there's very little movement in any of her joints. I'm left to read her eyes and expressions when she has an itch, wants a drink, has a pain or requires her pad changed.
As discribed in the end stage, an other fault has vanished. Her head use to fall back which I supported with my hand while pushing her in the w/chair. For many years now when I sit her she holds her head up. I've had to work on her shoulders and neck. I can see no reason why she can't survive for years to come, please God.
Lyn have you been back to check your Dad's progress and how about you? It would be interesting to learn how you brother has managed, and what he's learned, or gained from the caregiving experience. Take good care of your self, God love you.
May your God go with you. Padraig

Hi Lyn Mary, Linda and fellow carers. I've often wondered, if the powers that be understood the damage done by placing very young child and babies in orphanages. I'm only too well aware that it is impossible, even with the best will in the world, for the staff to become emotionaly involved, or attached to any child. It's a no win situation both for the children and staff.
In my eyes it's the same with NHs. Years later I still feel like crying, when I recall seeing the pain in the eyes of so many people at the NH waiting to die. I'll always remember one old lady with scraggy hair, no teeth, glasses and a face badly bruised from a fall. She'd been trying to remove her pad when she fell off her chair. I'm not given to embracing any of my family, that is unless they first place their arms around me.
When I put my arms around this lovley lady it was hard to keep back the tears. No one ever visited her, now she's long since passed on. How can anyone work with such people without being hurt?
There's got to be a better way to bid goodbye as we would wish for when it's our turn, just as we welcome newborns.
Why are NHs through out the world placed so far away from towns? Could it be from the past, that like orphanages there're out of sight and out of mind? When I muted the idea of small units located within communities, it was considered not to be cost effective!
We had a surprise yesterday the Community Nurse rang to ask me if Jean would like a flu shot? As she was a new girl I let her handle Jean so as she could understand what it entailed removing clothing from one so stiff. Trying to point out where improvements could be made I was greeted with:"I know, but that's how the system is". All I could say was thank God I do things my way. That was our once a year visit.
Lyn, it's wonderful news that your brother now understand what it means to be a fulltime caregiver. Does that now mean your now his hero! I hope you're getting better, as I know you'll miss sharing the caring for your Dad.
May your God go with you. Padraig

Hi Lyn, Mary, Linda and fellow carers. Last week I was explaining to the visiting Psychologist how I managed to survive without an education or family.
The secret for me was to take control of my life as much as was possible. That is to say, not accept blindly what I'm told, what's written or advertised. Those who do hand over control, to the teller, seller or writer often end up with problems leading to depression and anxiety. Then one hands over control to a Doctor for treatment.
The Psychologist smiled and remarked: "Did you know that people in mental institutions live longer than the general public? Because they have no worries. Makes sense to me.
The reason I relate the above is because I've read where one expert has conducted AD research in a convent. He concludes from the results of the research, that the Nuns lived on to a ripe old age because they were educated. It's now being concluded that those with a poor academic background are more prone to be affected with AD. I'd be inclined to refer the researcher to the results from the mental institution!
In my own way I'm doing research with Jean!
She and I are doing very well. I've now weaned her off the baby bottle. We've progressed to drinking from a glass tumbler, it's easier and qiucker.
I'm wondering how Mary is doing, can't get her out of my mind, I pray that she's having a peaceful time at last.
Lyn are you much better? I hope so!
May your God go with you. Padraig

Hi Lyn and fellow caregivers. At first sight I'd like to know what you make of the following.
Some time ago I had an appointment with Jean's Psychologist's. It's no more than a 15 min drive. As our daughter was visiting at the time, she agreed to sit with her Mom while I attended the appointment. Can you imagine her surprise when I returned 20mins later. I had to tell her that I couldn't find my way! I'd turned back part of the way there, because I couldn't remember how to get there. Last year I was confused finding my way around town where I've been going for almost 40 years!
What do you make of that?
Phone just rang, what a surprise two staff from the mental health wish to visit me in around an hour's time. Can you believe it, they are conserned that should anything happen to me, something should be arranged to help! That must be because I did ask a few weeks ago when I had a touch of flu, what would happen if I was very ill? The answer: "We'll get someone in to sit with Jean while you visit Your GP". My response: "That helps, so if I break my leg, I can hop along to my car and drive there". Must have got people thinking at last, only four years and seven months later. By now, I find that very funny, and it's made my day. Things are only impossible if you don't try. Better to laugh than cry.
Lyn, I wish I knew something about crohns so as I could help. Does your mindset play a part in it, looks like a very painful illness.
Must dash, again have a lot of washing on the line, then these visitors, makes a change to see someone.
May your God go with you. Padraig

I agree that the stress could play a part in your forgetting things....I do it all the time .I can walk from kitchen to LR and forget what I was going to do or get so I dont think you need to worry ......you have handled so much on your own for so long it is going to cause some stress whether you are concious of it or not .........

Yes my Crohns and thePG can be made worse with stress, anxiety and foods I should not eat which are so many ........

I am now not able to eat cereal with milk and that was a favorite ..pizza would throew me for a loop as woiuld any take out foods or foods with lots of preservatives in them .....

I mostly eat chicken and mashed potatoes and more chicken ...lol

I am glad you are having visitors let us know how you make out

Butterfly kisses and
God Bless
Luv
LYN