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Gerard Butler GALS
Swansong

Bill's Alzheimers

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After some 9 years of symptoms, seeing 3 different neurologists, and after being given conflicting reports and diagnosis of what might be causing my husband’s cognitive decline, yesterday the Alzheimers specialist up at OHSU finally confirmed that Bill has slowly advancing Alzheimers disease.

Last night:

It was some time in the very early morning. I was in that place between awake and asleep. I was wrestling with my considerable worries. Unable to sleep-but not awake enough to move a muscle. Bill was asleep beside me, snoring softly. The cat was curled around my hip. I must have fallen asleep with the TV on because an early morning TV show was talking away in the room.

I felt a separation between me, the noise of my ears and the TV. It was as if everything went silent and peaceful. Then...a conversation began with my Lord. I began asking questions of him in my mind (spirit?) I asked him why he has given a weakling like me such a great burden to bear. I asked him how he expected me to bear it, knowing that I am not a strong person and that in many areas of life, I am low functioning and timid. I wasn't angry-I was just asking.

It is difficult to express what he said to me then, because his words are so much more than words. They are pictures, sounds, emotions--thoughts layered upon thoughts that rolled over me like waves upon a rock. I simply lay there and let him "talk".


This is what he said:

"Do you say that I have given you this burden? Do you believe that I have a laid it upon you intentionally? Do you believe I would intentionally cause my children pain? That I would place them in a crisis deliberately? Would you do this to your own son? Would you make him suffer on purpose? (and then he made me to know that He made his own SON suffer ONCE for the salvation of the world.)

The conversation continued: “Did you not suffer with Nathan when he went through his crisis? Were you not there beside him throughout his ordeal?

As you were with him, so I AM with you. As you suffered with him through his suffering-so I AM suffering with you through yours. As you took on his burden-so I AM bearing your burden with you. And-as you believed that good would come of your son's suffering, so I WILL make good come from yours.

I do not WILL that my children suffer, neither was this burden given to you by me. The world is full of disease. The bodies of you and your loved ones cannot live eternally. There is death, there is illness, there is suffering-but this is not the end, and you know that.

I promise you, although you cannot see it now, I will bring good from your suffering and the suffering of your loved one. I will take your darkest moments and deepest fear, and I will make something beautiful. I will bring light out of the darkness, and in this life-I will will bring blessing out of pain. It may not be for your sake only-but for others in your circle. Others who are watching. But I will bring good. I will bring dancing with the mourning. I WILL bring peace amidst the storm. And I will be so close to you, Bonnie. I will comfort you and press you against my heart. I will be there in the night when you cry and are afraid. I will speak to you as I AM speaking now. YOU WILL NOT BE ALONE. I will bear it with you until he is with me. And know for certain-I WILL be with him throughout the fogging of his mind. Nothing will separate me from him. Nothing will take his soul from my keeping. Even if it seems he is lost in the dark, know for certain that I AM there in the confusion of time and space. His body may one day express fear and anger and a return to infancy-but I will be there in the core of his being--holding him together, lighting his way and loving him as my son--the man I chose for you, my daughter."

I don’t remember how the conversation ended. I did not cry or say anything. As the ocean of his presence had rolled over me--it simply rolled back like the tide.

Swannie

This is us this May 19, our 36th wedding anniversary

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Edited by Swansong

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God Bless you (((HUGS))) Ya'll will be in my prayers.

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Thank you for sharing this beautiful conversation, Swannie. My heart goes out to you and Bill as you travel these uncharted waters. I'm glad you know in your heart that you won't be alone on this journey.

:hugs: to you both,

Jilly

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Dear Swannie; I understand your fear of the unknown..my father has Dementia and has had it for many years..it is a form of Alzheimer's but not full blown..yet. He has forgotten a lot of things and now tells stories that are completely fictional..some from television..others well he has picked up from conversations..I am going to spend a few days with him for Father's Day as is my eldest sister..we do this once a month..He is in a "home" but we are allowed to stay in his small 3 room apartment for visits...He calls me "Doll" though it used to be my mother's nickname he used when she was alive..I am just happy that when I call him every two days; he still recognizes my voice..

My mother in law had Alzheimer's and in fact died with it..but that took many years. For her; it was a blessing in disguise for she dreaded the day; that her husband would die and leave her completely alone...by the time he passed she had no fears and in fact had no recognition of him at all..

The burden is a heavy one be sure but hopefully your community can help you with that since today;Alzheimer's is more widespread and acknowledged by the medical profession..Back in the day...not so much! Now there are support groups and places that assist with your needs as they grow..I am sorry for your dilemma but glad to hear that your faith is strong; since that alone is enough to help you cope with the years ahead.

Bless you for sharing and I will keep you in my prayers...you are not alone..as your conversation confirmed...he does not give us things we can not handle..with prayer and faith he leads the way with a gentle guiding hand..invisible but firm..such is faith. Hugs May

Edited by may

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Another conversation a few days later:

Saturday June 7: afternoon walk at Columbia Park:

Some of you may not know that I have been angry at God. This anger has created distance between us as I have pushed him away and accused him. I have not heard HIS voice for many years because I turned HIM away when I thought HE was not the God I wanted to HIM to be. Now I find myself shocked that he is speaking to me in a quiet and mysterious fashion HE never has before. It is an ongoing conversation that I hope will continue as my heart grows softer toward HIM and my faith is renewed.

Sometimes we enter Narnia through an enchanted wardrobe--and sometimes “HE” steps through the wardrobe into our broken heart.

Bill and I were walking in our favorite park this afternoon at around 5:00. You couldn’t ask for a more beautiful day! Golden afternoon sunshine cast leafy shadows on the path as we walked side by side. Children splashed in the water features, and all around us were the sounds of laughter, music and conversation.
Bill and I held hands as we circled around the grounds. Sometime we talked, and sometime we fell silent. It was during one of those quiet moments that I began to think about what lay ahead for my husband. I began to consider all that needed to be done in the months ahead to prepare for years from now, when he will enter the Winter of Alzheimer’s disease. I thought, “how will I cope? How will I know what to do? How will I handle watching the death of the mind and the body of the person I love so much? And what happens to a person at the end stages of this disease? Particularly, what happens to their soul?”

That is when the Lord began to speak to me again. Again, it is difficult to pinpoint the words in such a conversation--because these are nor merely words...but impressions from HIS Spirit into mine. He told me that when someone has Alzheimers, their brain and body are dying, but the soul of the person is still there, even though the brain and body can no longer give the soul (the personality) its natural expression. The body and brain have their own impulses apart from the will and desire of the person, and as the disease progresses, there is a great struggle within the person to be who they really are. Eventually they will lose this battle.

He told me that when my Bill reaches that stage of the disease, I must have faith and KNOW that although it may seem as if Bill (the soul of Bill, the personality, the person) is absent from the body, he will still be present, and the Lord will be present with him.

The Lord said:
“I will enclose him in my secret place, in the cleft of the rock--where he be will safe and where he will KNOW that he is not alone.”

My greatest fear is that my Bill will be lost, or caught in a dark memory; reliving childhood traumas and fears.

The Lord then told me:

“Bill’s body and brain may act out the terrors of past traumas. His brain may express such memories and fears because of its physical degradation--but KNOW that his soul will not be in torment. I will enclose him and comfort him, and to him, these things will merely be shadows. The body will react. The body will thrash against the disease, but Bill’s inner man will be safe with ME. You will weep for him, as you must--because you will only see what happens on the outside. I will do my work of grace on the inside of him, where you cannot see. This is where great faith will be required of you because you must believe MY words and not your own eyes

Never think he is gone or that you cannot reach him. There will be moments of recognition. There will be flickers of the love that has held you together for so many years. I will give you the strength to love him through it all. I will give you the courage to not hold back your heart even if he fails to recognize your face. And I will hold his soul, secret in my bosom until that day when the silver cord is loosed.”

The Lord spoke further:

“ Bonnie, all of this seems insurmountable to you as you look ahead. You gaze at the mirror and make a list of all the reasons you can’t go through this: you are scared of everything. You do not drive. You are not independent. You are afraid of making phone calls and you don’t understand facts and figures. You are unsure how to proceed with arrangements, finances, caring for your home, taking over...becoming Bill’s caregiver.

You fear that you will not be strong enough to be all he needs you to be. You fear you are weak and ineffectual, and you see yourself as a child who never grew up. I promise you, when that winter comes, and throughout every season of Bill’s disease--when your greatest strength is needed-you will have it. You don’t have it now, that is true. But day by day and year by year, you are gaining in strength and life-skills. When the time comes, you will be fit for the work that lies ahead.

I AM growing you on the inside--preparing you to take on all that will be required of you. When the time comes, you will be surprised by what you are capable of. And you will not be alone. There will be others there to support you. Do you not know that Bill is a loved and honored man by those in his circle? Their grace will uphold you both on this journey--for I have brought you all together for such a time as this.”

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:hugs: to you. Thank you for sharing these special conversations. I hope they are giving you strength for now and the journey ahead.

Blessings to you and Bill. :rose:

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Thank you for your prayers and kind thoughts for Bill and me. This friday I will attend my first counseling session with a therpaist who helps folks with all sorts of anxiety problems. I've decided that I need some "tools" to get my fears under control so that I can function at a higher level. I am hopeful that she will be able to help me with some coping mechanisms, and perhaps open up the pandora's box as to why I have been riddled with fear my entire life.

Edited by Swansong

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I spent last night throwing things in the garage and cursing my head off at this awful disease. I have never in my life thrown things in a rage, but I did last night. Not sure how to get through this. Please pary for me and Bill.

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Oh dear; I know yes I know exactly what you mean...I loved my mother in law dearly but when I went to take care of her while her husband was in the hospital (a heart attack due to the stress of her condition) it was a war zone....I personally never fought with her but the eldest daughter did from her teenaged years...needless to say; being with her brought out all the old wounds for poor Susan..I had to be there for the both of them...Now my beloved mother in law is gone but the bitter ending for her daughter is still engraved in her mind...I try to remind her that it was the illness (Alzheimer's) and not her mother in the end..but alas for Susan it was too much to accept. I still have good memories of my mother in law and they far out weigh the bad ones...so I cherish them greatly..I pray for your husband and also for you dear friend...strength will get you through this..and love will guide your path... Hugs May

Edited by may

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Thankfully, apart from a few little arguments, Bill and I do not fight and he is not combative at this stage. It's just that sometimes the stress of dealing with all our losses gets to be too much and I HAVE to get it out without upsetting him. So I wait until he goes up the street for coffee, or goes for a walk, or is asleep--then I let it out. I am sorry about your own experience in dealing with a loved one who had this awful disease. God bless you, May.

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Dear friends, please keep us in your prayers. Bill has now been confirmed to be in the moderate stage of Alzheimers.

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:hugs: and prayers to you and Bill, Swannie. I'm so sorry for the road you are having to travel on. My heart goes out to you both.

Love to you,

Jilly

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And still the docs keep changing his diagnosis.  Now they say he doesn't have Alzheimers, he has vascular dementia.  He really hasn't progressed a whole lot since I last posted on this thread, so I am counting my blessings.

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Oh no swansong, *hugs* I am so sorry about this. If you need to vent or anything you are more than welcome to inbox me. Prayers and positive vibes out to you and everyone dearie 

 

Phantom

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