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Old 04-11-2007, 11:38 PM   #1
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My 89 year old father passed away March 9th. His death was not directly connected to his Alzheimer but he had experienced rapid decline since last year and was in mid to later stage judging from his symptoms. He developed a bladder infection which went into his blood stream (septacaemia), and pnuemonia. While in hospital he developed a third infection from the antibiotics and was placed in isolation. He was in hospital for over 3 weeks and he refused to eat or drink during most of that time. He could communicate very little and we were not sure whether he was comprehending where he was or why. We don't know if he just didn't want to eat, felt too sick to eat, or could not swallow. His food was all mashed and all liquids were thickened. He seemed to either hate the food or the food hurt his mouth. We tried all of his favorite foods - he would take a bite or two then hold up his hand. He had provided us with a living will 17 years ago which I used as the basis for not seeking a feeding tube. I have struggled with that decision since making it. Once he was off the i.v. antibiotics (and fluids) and "clinically" better, he was able to voluntarily eat and drink, or not - he continued to refuse. It had been three weeks already since he'd eaten. It was a terrible to watch him waste away and die, not knowing if he knew that by not eating he would die. I don't think he did understand the consequences, but I knew he would hate to go on with a permanent catheter and likely a permanent feeding tube. He hated being in hospital and the only words I could make out in his last days was that he wanted to go home. In the past 4 months, home was back to where he was born and hasn't lived for 40 years. He wanted me to take him. He looked at me with such longing in his eyes, it broke my heart. I sat with him around the clock in the isolation room for 5 days until he passed away. I have read some of your postings about the final stages of the disease for your loved ones and I know he was lucky to go before the disease took any more of him. He knew who we were, he still was able to smile when family would walk into the room and he would try to talk to us. I know he is in a more peaceful place.

The second part of this story is that my 86 year old mother also has Alzheimer. She has had it for much longer (or there has been evidence for much longer) so her experience is a slower progression. Until October last year Dad tried to look after her, since then home care workers have been helping while we awaited placement in a Nursing home for both of them. Now that my Dad is gone, my Mother is going to the nursing home alone. She is very depressed and we expect the move to be very distressing for her as well as my sister and myself. Her move in was today and my sister handled it. I am awaiting word on how she is. I see many similar comments written in your posting about how your loved ones felt about being in a home. It is so hard to make these decisions for your parents but I have found encouragement in your words.

I wish I had found this site sooner as I have searched for information so many times in the past months. I am puzzled that we could not have known that Dad had Alzheimer until he was in mid to late stages. My sister and I wonder if we just refused to see it - or if it is possible to see this sort of rapid decline. There was an incident last July that seemed to start this decline for both of them. Without going into great detail, my Dad left a tap running in the apartment they'd rented for 20 years - the landlady successfully evicted them (after a hearing, etc.). We had to move them to a city to get them into a senior's residence (none in the town they had lived), and then my sister sold her house and moved to be closer to them but they were completely out of their familiar surroundings. In July we didn't know my Dad had Alzheimer, in December we took the car away and by January he didn't recognize himself or my mother in the mirror or even understand the concept of a mirror!

This is a long posting for a first message, I just didn't know where to start. I'd be interested if anyone else has experienced such a seemingly rapid decline of a loved one.

 
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Old 04-12-2007, 05:29 AM   #2
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Hi and welcome, there are so many experienced and kind members here to help you. I just wanted to say after reading your post that maybe your Dad was having mini strokes or even small strokes. My Dad had a large stroke and then had several seizures and he sounds a lot like your Dad. He went downhill fast and in the end couldn't eat. He ended up in a VA nursing home and we refused an IV. He lasted 2 weeks. It was difficult, but we knew that is what he wanted. He had no quality of life and couldn't do anything, but he still knew us up until the end. We know he is at peace now and he wouldn't want to live with a feeding tube the way he was. Anyway, I hope you find peace and good luck with your Mom. It must be so hard to watch both parents go downhill. My Mom is 80 and so far is doing well. My FIL has dementia caused from mini strokes. He can't make new memories, and forgets a lot of things, but still knows how to basically care for himself and still knows us. He is in a senior apt. complex next to a nursing home for when the time comes. Keep us posted and glad you found this site. Blessings, C

 
Old 04-12-2007, 05:37 AM   #3
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savv.....your compassion jumps out easily by reading between the lines of your post. Such challenges you have had! This horrendous disease robs us all of much more than the loss of our loved one.

I remember reading that, in some patients...even something as small as a cold can accelerate the progress of Alzheimer's. Your father seemed to several things that could easily speed it up. One thing I've learned is that this disease has many faces; it can quietly creep into your life with subtle changes...or quickly become very obvious. The fact that your dad was your mother's caretaker is such an admirable feat! My own mother is in a wonderful facility (9 years)...both of my in-laws were placed in seperate places a year ago with Alzheimer's. Each of them have been diagnosed with the same disease, but the progression is very different in them.

It is good you have your mother in a safe environment. I agree...this is a wonderful place learn, share, and express. Sending good vibes your way.........Pam

 
Old 04-12-2007, 06:11 AM   #4
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Re: New Member - First Post

I found this Board in 2004 when my Mom was already in stage 4, rapidly approaching 5, but the rest of the family was still pretty much in denial. I was totally ignorant about this disease and was so bewildered that I was often at my wits end. I sent in a cry for help not really expecting anything.

I was so happy when I got several answers from caring people who had been or were now in the same boat. I suddenly was not alone! There were people out there who even took my side against my relatives who were in denial. It saved my life.

Welcome, and I hope you also get all the moral support and information that you need, as well as a place to vent. I really made use of that aspect - some might remember the time I walked barefoot into the bathroom and stepped on a pile of Moms poo.

I would have screamed out loud if I hadn't had this place to complain and lament!

Now my Mom is in a safe and loving nursing home, nearing the end of her long long life. Her Dementia progressed rather slowly, but noticeably. My brother visits her often; I can only go 2 or 3 times a year since I moved far away from there when I retired in 2005. My sister still thinks there is not all that much wrong with her.

Love,

Martha

 
Old 04-12-2007, 06:39 AM   #5
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First off, don't beat yourself up regarding your dad. You say he smiled when you came into the room, that he knew who you were. If he was that aware, I'm sure he also knew the consequences of not eating. Sounds like he made a choice and you honored it by not forcing other measures. I remember when my dad was in the hospital dying of cancer. He kept pulling the tubes out of his nose and arms until the hospital staff tied his hands to the rails. When visiting him days before his death, he begged me to untie him. I remember the feeling of total despair when I refused. I hated seeing him tied like a criminal but I knew I was too much of a coward to be a part of his quicker death. Try to find peace with the fact that you made the right decision and you were strong enough to be there for his last days. He must be so proud of you!
And your mom will be alright too. My mom is now in her seventh week of being placed in an assisted living facitly. They tell me it gets easier but so far that's not the case. I'm consumed with these events. I go to sleep wondering if she's okay, I wake up wondering what she's doing. But I know that she's safe and the staff where she is seem wonderful. It's just hard that they don't understand why they're there and always want to go back to their home where they felt secure and everything is familiar.
I'm new to this board too and it's a great place to vent, get advice or just to know that others have the same problems.
Too bad our respective governments didn't read some of these posts. Maybe they would spend some of our money on making sure that our elderly could live in dignity without spending every last cent they have.
Good luck to you and your family. Sounds like you've made all the right decisions no matter how hard it is now.

 
Old 04-13-2007, 08:36 PM   #6
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Dear Youngest Sib

Thank you for your kind words. My father also spent the first three weeks in hospital pulling the i.v.'s out and trying to pull out the catheter. He too was restrained for several days until the anti-psychotic medication started to calm him. It was awful to watch and makes you feel so sad and helpless. It was a roller coaster ride where one day we thought our Dad would make a recovery and we could make out a few things he was saying, the next he would be incoherent and agitated again.

My Dad hated every minute he was in the hospital - even if he wasn't lucid I knew he just wanted to get out of there. I did what I could to help him and I think I know in my heart I did what he would have wanted but the doubt still sneaks in every now and then.

I spoke to my mother today in the nursing home. She sounded okay until it was time to say goodbye and she started crying. My sister also called me today and was very upset that Mom was crying today and asked why she can't live with one of us. My sister had been with her all day on Wednesday (her first day there) and the following day. Today was the first day Mom was on her own. I do feel better though knowing that she is safe and in a caring environment. I told my sister about this site and all the wonderful people who have been supporting each other. She has registered and I hope she will find some comfort in knowing we are not alone in this situation (and we are thankful we have each other for support).

I hope your mother will settle in the assisted living facility she is in. It is so traumatic for older people to be placed somewhere unfamiliar. My parents had just over four months together in the retirement lodge but could not get used to the change.

Thank you for your response - it made me cry but it helped a lot.

Savv55



Quote:
Originally Posted by youngest sib View Post
First off, don't beat yourself up regarding your dad. You say he smiled when you came into the room, that he knew who you were. If he was that aware, I'm sure he also knew the consequences of not eating. Sounds like he made a choice and you honored it by not forcing other measures. I remember when my dad was in the hospital dying of cancer. He kept pulling the tubes out of his nose and arms until the hospital staff tied his hands to the rails. When visiting him days before his death, he begged me to untie him. I remember the feeling of total despair when I refused. I hated seeing him tied like a criminal but I knew I was too much of a coward to be a part of his quicker death. Try to find peace with the fact that you made the right decision and you were strong enough to be there for his last days. He must be so proud of you!
And your mom will be alright too. My mom is now in her seventh week of being placed in an assisted living facitly. They tell me it gets easier but so far that's not the case. I'm consumed with these events. I go to sleep wondering if she's okay, I wake up wondering what she's doing. But I know that she's safe and the staff where she is seem wonderful. It's just hard that they don't understand why they're there and always want to go back to their home where they felt secure and everything is familiar.
I'm new to this board too and it's a great place to vent, get advice or just to know that others have the same problems.
Too bad our respective governments didn't read some of these posts. Maybe they would spend some of our money on making sure that our elderly could live in dignity without spending every last cent they have.
Good luck to you and your family. Sounds like you've made all the right decisions no matter how hard it is now.

 
Old 04-13-2007, 08:58 PM   #7
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Dear Cyt:

Thank you for responding with your thoughts. We had asked my Dad's long time doctor last summer if Dad had Alzheimer but he didn't think so. He said maybe vascular dementia. Several years ago my Dad did have an episode which seemed like a stroke, but again his doctor said there was no evidence in the CAT scan. When we had to move my parents to a new city last October, they had a new geriatric doctor who gave them both mini mental assessments and he felt certain they both had Alzheimer with Dad worse than Mom. We then started researching Alzheimer and he had so many of the symptom that we could not discount it though my sister and I both think he has had mini strokes as well. The geriactric doctor in the hospital where my Dad was admitted with the bladder infection said CAT scans showed evidence of stroke/s - she said she would question the Alzheimer diagnosis. It is so hard to sort through all of the opinions and in the end just do the research yourself and trust your own feelings. As I have gone through this site, I see so many examples of people talking about their loved one and it could be me writing it - the parallel is uncanny. You mention your Dad having a very similar experience and I think you may be absolutely right - in my Dad's case, perhaps mini strokes as well as Alzheimer and that contributed to his rapid decline.

I really appreciate you responding and the suport you and others have provided so quickly. Thank you.

 
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