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09/26/2011 05:34 PM

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kildare56
kildare56  
Posts: 4153
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I'm an Advocate

I have been a member of the Crohns site for 7 months and found it very helpful. Yet, when I come here, I don't know what to say. My father died from this despicable disease and I believe it took my mother as well. I have an odd sense I don't belong here.
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09/26/2011 06:36 PM
alznotwell
Posts: 1145
Group Leader

Oh my goodness Kildare. I'm sorry if we have given you the impression we don't care whether you are here or not. I'm going through such a difficult period with my mom that I hardly know where my head is, and I sometimes drop the ball on the forum.

Mom has had four falls and four emergency room visits in six weeks. I just got home from spending four days with her and she fell again today. I'm thinking my worst fear is going to come to pass. No care facility will keep her because she is so out-of-control and aggressive. I'm racking my brain wondering what to do, because after caring for her since 1998 I am literally worn out. Medication does not seem to calm her much, and often makes her agitation worse. Any suggestions? ANW


09/26/2011 08:15 PM
kildare56
kildare56  
Posts: 4153
VIP Member
I'm an Advocate

I did not mean to sound like a pouting child. This is very serious business and I do not want or expect a ticker-tape parade. I'm a bit addled and more so at somtems than others. I would like to be able to help in some way. Actually I lost both parents to this thing is less than one month. I know I am not the victim, but I feel abit like collateral damage. My wife has many tears experience working in nursing homes as an RN. I hope I can contrbute to this group in some small way even if only to offer a genuinely empathetic ear. Thank you all.

09/27/2011 10:15 AM
alznotwell
Posts: 1145
Group Leader

We appreciate all participation Kildare, and we leaders especially like to see ideas other than our own presented for consideration. Thanks, ANW

09/30/2011 05:04 AM
evonne
Posts: 52
Member

kildare56, you said you believe 'it' took your mother as well. Did your mother have AD and was not diagnosed? that happens sometimes. I'm interested because I believe my husband has AD and is not diagnosed. I don't know anyone personally that went all the way through this without confirmation of what it is. One of our daughters works in a nursing home and she says she has patients that are not diagnosed with any type of dementia yet clearly show the signs of it. It's curious.

Alznotwell, I'm so sorry to hear what you are going through. It is the fear of many of us I think; "will my loved one get to the place where I can not care for or protect him, and yet will I be able to afford or find a home for them?" I don't know where you are, but I have thought (maybe ignorantly) that there are homes with special wards for people with more aggressive behaviors or extreme needs. Can you do an internet search? My husband is a very large man, in denial, without diagnosis, and gets very angry sometimes. I anticipate there will come a time I won't be able to care for him - or he won't let me. He is afraid I will put him in a home. He said that if I ever try to, he'll run away. I try not to worry that far ahead, and pray God will help me wherever this path leads. evonne


10/26/2011 07:09 AM
kildare56
kildare56  
Posts: 4153
VIP Member
I'm an Advocate

Evonee - let me explain. My father got the disease in his late 70s. Until about age 82. he reamined at home with my mother and no other real caretakers. She was only three years younger. It was a true labor of love, but I think you all know how much of a toll it took on a woman of her age. Especialy during what we euphamistically call the "troubled" periods". Our troubled peiods/her nightmares. But she keep her head high in the false belive he would be home soon and everythind would be normal again. As he approached 86, she found she could no longer keep her car. She caused two accidents in one day. A couple of weeks after that, we had "the conversation" with her because she was no longer safe at home and had no reliable way to she my father. She sold their home and moved in with one of my sisters. I believe that was the point at which she understood my father would never be home again.

After all those years, er strength was spent. In one month, she hafe to go into the the same nursing home qith my father. A week afeter she got there, I managed to drive up and visit. I sat by her bedside and tried to speak of the things I knew she always loved. Finally, she rolled her head so that she was looking directly at me and, with her eyes so flooded with tears, said so very softly "I can take no more pain. I have to go home." She need not say anything else. One of the hardest thinga I ever did was to sit there and say nothing more than "I know."

Two weaks later I got the call that she had passed away. My brother and I could not drive fast enought too get there before she was gone. My father, at this point had recognized no one for about two months. Yet I will swear he knew the exact monment his bride passed on. After all hese years, one day almost one month to the day later, he also passed away. Ever since hat day I am the srong one in the family, Isn't it odd when you just can see yourseftha way?


10/26/2011 10:02 AM
tony36
tony36  
Posts: 1408
Group Leader
I'm an Advocate

Kildare I only got to see your post now, sorry.! Everyone touched in any way by AD belongs here and will get support here. It is indeed a horrific disease and we have all been supported and helped here (and elsewhere). Feel free to come here any time.

Tony


10/26/2011 12:37 PM
alznotwell
Posts: 1145
Group Leader

Again Kildare I am just back from being with my mom. I have said it more than once on this forum. I'm so sorry for the hole left in your life at the passing of your parents. When I think of it from their point of view, I am happy they no longer suffer. Life is quite often a dichotomy like that and it makes it difficult to resolve your feelings about it.

I got to the point with my mom that I knew it was either a nursing home or I was going to die from exhaustion caring for her. Having her in a nursing home comes with its own set of problems, so we are still spending a lot of time seeing to her needs. She was so sad yesterday, crying constantly and wanting to come home. I cried for miles on the way home from the sadness of it. Compared to the nursing home, she now remembers her life at home as being wonderful, when in fact the last ten years of it she was incapable of enjoying anything and was as ferociously unhappy here as she is there. It would be even worse now for me because I am older and not as well, and her needs are greater. Remembering that enables me to drive away and leave her in the nursing home. At least there they have multiple people working in shifts to care for her.

Now, even though she is still alive, I try to focus more on the good years and remember her like she used to be. I know that you know your mom would not have wanted to be anywhere else but taking care of your father during the last years. Try to take comfort in the thought of a marriage of loyalty and devotion like they had. ANW

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