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Old 01-30-2010, 03:41 PM   #1
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Unhappy My first post........heartache

These boards seem thus far to be the most honest and easily to understand from others I have seen.
I am losing my dad and it hurts too much. My heart has a hole in it and I think it will be there always. I am all cried out.
My dad is 91. Yes, that is old. His health is perfect other than his mind. It is not fair. He has had dementia for now a bit over 2 years but he has been a joy and enjoys looking at nature, children, and animals. The last 2 weeks he has gone down so fast it does not seem normal.Two weeks ago he hardly needed a walker. Last month he was walking up staircases well. Now he will hardly get out of bed. He is refusing to eat. He is still sweet as can be but strong enough to tell everyone "this is my bed, and I want to rest". So I called Hospice in. There will be no feeding tube, no heroic attempts.
My dad's family have NEVER called me. They get their information from calling my elderly frail mom. They are millionaires many times over and have NEVER offered any help. My parents are now down to their last dollars in this very expensive care provided. I have learned a lot about people these last few years. Now it is day-by-day.

 
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Old 01-30-2010, 04:14 PM   #2
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Re: My first post........heartache

I am sorry for all your pain. Once this is all over, you will be glad you did it ... and calling Hospice in is a great idea. I lost my Mom to this disease when she was 99, having had it for 8 years. It doesn't matter that they are already old; it is still an awful shock to see them getting less and less mentally able, and losing more and more of their personality.

My Mom also spent her last penny on Dementia care, but it was worth it. Now that she has been gone for 2 years, I am content with the way everything went, including my sister not ever doing her share ....

I'm sorry your Dad's relatives have not bothered to help. That is so often the case. It is a hard thing to get through. How is your Mom holding out?

Love,

Martha

 
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Old 01-30-2010, 05:29 PM   #3
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Re: My first post........heartache

Your dad sounds like such a caring and sweet man. I, too, am sorry for your pain. No matter how old we are, or how old our parents are, we never want to see them get this way or to loose them. It is so hard to see.
Your dad is lucky to have such loving daughter to take care of him. I know it has to be painful for you not to have his family offer to help. I know that would bother me as well. Seems like this happens a lot in families for some reason.
Take care,
Karen

 
Old 01-30-2010, 06:53 PM   #4
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Re: My first post........heartache

Old, welcome to the our little corner. This is a great group and thought I am sorry you needed to find us, I am very glad that you did. There are great care givers here that understand.

I do understand exactly what you are saying. I too am losing my dad. He is 89 and we faxed the necessary forms for Hospice evaluation Friday. He was up and walking at will in October... and then the falls started. He has gone down hill consistently since then. Now he doesn't walk on his own and sleeps most of the day.

What type of dementia does he have? Are there any other related conditions? Is he at home or in a care facility?

I totally agree with you on Hospice and the necessary instructions as to what efforts will and will not be made on his behalf. It reaches a point when it is just time to let go. It is not that you love them less but perhaps that you love them more that you are able to do that. Yes, we will miss our Dads but we want peace for them. You have done all that you can do to be sure that he is lovingly cared for. Now just enjoy what time you have left, hold his hand, talk to him, tell him all the things in your heart that you need to tell him, and just be with him. Use this time to gather precious memories that will last a life time. Yes, our hearts ache at the prospect we see but let this time be as positive as you can make it be.

You have fought for him just as valiantly as he has fought for himself. It is hard to let go of that hand you have held onto for so long. so hold on to his hand and continue to love him...

As forr family... they can be a pain!! It is their loss that they have missed out on your Dad's final days. You can't change who they are so don't waste your energy on their negativity. you need all the positive you can muster for the journey you are on with your Dad.

I wish the best for you and your Dad. Come and vent and read and share any time you need to. You are always welcome

Love, deb

 
Old 01-30-2010, 11:53 PM   #5
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Re: My first post........heartache

Thanks. It is difficult for people who have not been in this situation to truly understand it. Or, they just do not really want to hear pain. It becomes a "family affair" dealing with it.
I believe my dad had some little strokes that started it. In Oct. 2007 he fell and broke his leg and they never checked to see if he had a stroke. In May 2009 he was hospitalized and they needed to do a test to determine how much his carotid artery was blocked but his kidneys were not good enough to handle the dye so I had him go on aggrenox, which is to prevent strokes.During this hospitalzation they did a CT of his head and said he had evidence of an old stroke so the only thing I can think of is that it happened when he fell and broke his leg. Then he had a blood pressure episode and went back into the hospital. They again, wanted to check his carotid with dye and he passed the kidney test, but the machine went down, so they discharged him and told me to get the test outpatient. HA! Try to get that done for a 91 year old! Three weeks went by and still no authorization. I finally got a call from the surgeon who "suggested" I get him back into the ER and get him admitted. I am a RN so I knew how to do it and I did. So, the next day he had his test and he was blocked over 90% so they did surgery. He got thru this surgery like a 30 yr old. That is my dad. No complaints ever.
My mom is doing well, considering. As for her extremely wealthy sister, and her husband, I have lost respect for them and would never ask them for help. Now my focus is getting thru this difficult time. I have never had to deal with burial planning, etc. I try to remember the good times and I hope I will forget this time and the time coming. I have been there for my parents, taking them to every doctor appointments, dealing with all the issues at their assisted living, and finally am on a family leave from work as I cannot do both. One sister spent the day today and she said that she thinks he will die tonight. My other sister will be there tomorrow and I will be there Monday and Tuesday. This sister could be right, but with my experience, he will hang in there for a bit. But, no one really knows. I feel like I am watching a bad t.v. program and I am unable to change the channel.

 
Old 01-31-2010, 03:57 AM   #6
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Re: My first post........heartache

My heart goes out to you Old because I do know exactly what you are saying. You are so right, until you find the ones that have walked your path you truly don't find understanding. That is why we all gather here

My Dad has his first heart attack in 1977, and even though he literally died three times they managed to bring him back from the brink. That was before the age of heart caths and bypasses. in the mid 80's, after his first heart cath, he was told there was nothing they could do because his heart damage was too extensive and his next heart attack would be his last. Three years later he had that next heart attack... and 5 bypasses. Almost ten years later he had a few of his bypasses stinted along with both femoral arteries. He also has blocked carotids but will not pass the liver test. Beyond that he has PAD complicated from the veins stripped from his legs for the heart bypasses. He has also had episodes of AFib. He was diagnosed with dementia over 10 year ago. They labeled it ALZ to begin with but we now know it was Vascular. His current CT scans show massive shrinkage of the brain, evidence of old strokes, and a small cranial bleed from a fall in October. I only wonder why he still functions as well as he does. Starting about a month before the fall in October that resulted in the cranial bleed he has gone downhill quickly. He has lost 35 pound down to 147.. and he is over 6'. He suffers from delusions and sleeps most of the day. His voracious appetite (we swore his full button was broken) has disappeared. He spends most of his time in bed or in his wheel chair snoozing. He is not a candidate for any surgery because of poor kidney and liver function and heart issues which are many. Yet on a good day he will call me by name. But I realize, as you do with your Dad, that our days are numbered and for that reason a hospice consult will occur next week.

My Mom has ALZ. Diagnoed October 2006 but had symptoms for at least two years prior to that. When she was diagnosed we tried to keep them at home with a caregiver but that didn't work well so in September 2007 they moved to AL. April of 2009 they were both moved to a locked ALZ unit. Mom is healthy... except for the ALZ. She has finally reached a happy place in her dementia emotionally but needs assistance with all activities of daily living.

Talk to your Hospice representative about burials preparations They can help you preplan much of what needs to be done. My mother wisely bought burial plots and even had her own headstone done. Though there are not prepaid arrangement she has talked to the funeral home and we know what she wants for her and Daddy. We have gone as far as get the information together for the obituary.

I have three sisters. One is of great help and is local. The other two live about 3 hours distance away but do not come often. Dad's sister who is in her 80's does come to see Dad as often as she can considering she has a 5 hour round trip. I did take Mom back to her home town December of 2008 and took her by her sister's... but Mom's sister has not been to see her since Mom and Dad moved to AL in September 2007. I feel as you do with this one.

I don't think you forget these times. I think you just put them in perspective once you are past them. They blend in and are not as painful and acute as they are when you are smack in the middle. Through it all I am truly trying to find the little positive moments to hang on to. I want to sit with my Dad and talk to him. Even if he doesn't visibly understand I want to tell him all the things I need to say to him. I want to make him as comfortable as possible. I just want to be with him as long as possible with as much positive energy surrounding us as possible. I will cry my tears when he is no longer here and there is nothing more I can do for him. But it will be short lived because I will have to be there for my Mom.

I wish for you the strength and courage you are going to need to get through this next short while. I wish for you to find those little moments that you can hold onto. I wish comfort for you and your Dad. Know you are both in my prayers. Hold tight to his hand until it is time to let go.

Love, deb

 
Old 01-31-2010, 06:41 AM   #7
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Re: My first post........heartache

old your post made me cry. I could read the heartache and frustration. We're in the same boat. We'll oar through this together. My MIL is 90 and 3 weeks ago could walk and cut up potatoes but is totally in bed now. This is a horrible decease. Your right this board is wonderful. Would you give your mom a hug for me. This must be so hard on her. What your feeling is understandable and okay. It's hard to be the one to make the decisions and seeing other people live life like nothing is happening it very painful. Some people just don't handle illness of others. The one thing your going to have when this is over is all the memories. Hang onto the good ones that is going to be your strength. I will pray for you too.

 
Old 01-31-2010, 01:58 PM   #8
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Re: My first post........heartache

What a hard truth this rings for a lot of us. Family isn't always there. That's just the fact. My husband's brother went and helped pack her up to send to us, then told my MIL "say goodbye to me because this is the last time you'll see me." What a thing to say to your own mother! He was a millionaire at that point. He has since lost a ton of money and his house due to the economy and his lucrative but very shaky line of work. But when he was able, he never once offered to help us out with her. He doesn't call her or us. He didn't even send her a birthday card! He's washed his hands of her.

I think that's just so sad. Those of us who have hung in there, loving and caring for our aging parents either in our own homes or through an appropriate facility, can have a clean conscience that we did the best we could. No one's perfect, and some can handle more than others, but it's frustrating and sad to see so many aged parents abandoned by their own children when the going gets rough. But we can't control anyone else's actions. We can only control our own. I don't fret about my BIL. It was his choice and one day he may look back and regret it, and maybe not. I'm more sad for him than upset or angry. As hard as it is, it's a blessing to care for an aged parent! I think we grow and gain a lot more than the parent does!

Old, cherish every moment that's left. He may not be able to talk to you or even recognize you, but I bet he knows somewhere deep down that you're there and that you love him! I'm so sorry for your heartache, but you keep loving him as you have and please let us know how you are.

Warmest regards,
Emily

 
Old 01-31-2010, 02:11 PM   #9
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Re: My first post........heartache

I am so sorry to hear your story. We do all understand. I wish you had found us sooner so you wouldn't have been going through it so long on your own.

My mom too is suffering from this disease..has been for about 10 years. We just recently moved her from her independent living facility to an assisted living one so I understand what it is to watch them disappear into the disease.

Love, Meg

 
Old 01-31-2010, 02:44 PM   #10
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Re: My first post........heartache

Quote:
Originally Posted by BlueAtlas View Post
What a hard truth this rings for a lot of us. Family isn't always there. That's just the fact. My husband's brother went and helped pack her up to send to us, then told my MIL "say goodbye to me because this is the last time you'll see me." What a thing to say to your own mother! He was a millionaire at that point. He has since lost a ton of money and his house due to the economy and his lucrative but very shaky line of work. But when he was able, he never once offered to help us out with her. He doesn't call her or us. He didn't even send her a birthday card! He's washed his hands of her.

I think that's just so sad. Those of us who have hung in there, loving and caring for our aging parents either in our own homes or through an appropriate facility, can have a clean conscience that we did the best we could. No one's perfect, and some can handle more than others, but it's frustrating and sad to see so many aged parents abandoned by their own children when the going gets rough. But we can't control anyone else's actions. We can only control our own. I don't fret about my BIL. It was his choice and one day he may look back and regret it, and maybe not. I'm more sad for him than upset or angry. As hard as it is, it's a blessing to care for an aged parent! I think we grow and gain a lot more than the parent does!

Old, cherish every moment that's left. He may not be able to talk to you or even recognize you, but I bet he knows somewhere deep down that you're there and that you love him! I'm so sorry for your heartache, but you keep loving him as you have and please let us know how you are.

Warmest regards,
Emily
And what is sad is when she's gone, these people who "abandon" usually have their hands out for their "fair share". At least I know, while I was in a desperate and dire need for whatever money my mom had left that was given to my sister and I, I did the noble thing and walked away from it. I knew that it was the right thing to do, she did a great job taking care of Mom.

I just knew that God would oversee and take care of me and so far, I'm holding my own. Praying that son gets a job soon so that some of the burden can be transferred to him, right now don't feel right looking for that until he does obtain full-time employment

 
Old 01-31-2010, 02:52 PM   #11
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Re: My first post........heartache

This is so sad. My mother died three years ago. She had cancer which spread to her brain and she died at the age of 85, having led an independent life up to the last couple of months. Her last weeks were spent in a hospice where she was well looked after and cared for.

She was quite lucid but gradually her personality changed, though not in an unpleasant way, she was just different. In the end though, there was nothing left, just a shell. If that seems a cliche, well, it's the only way to describe it. My mother was there in the bed but what made her who she was had gone. In a way, it made her death easier to bear when it came.

I have nothing but sympathy for you all in you difficult times. Sometimes family members won't help because death and disease frightens them. Sometimes though they're just feckless and useless - you can't choose your relatives. Try to be strong and remember that you're doing the right thing.

 
Old 01-31-2010, 05:18 PM   #12
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Re: My first post........heartache

At least that wasn't true for me ... my sister, who did the least of the 3 of us during Mom's illness, also took the least when it came to distributing Mom's belongings. She insisted I take the most. I do believe some people just cannot stand the procedure of illness and dying, and especially of dementia and losing the personality. So they 'say goodbye' way too early.

Love,

Martha

 
Old 01-31-2010, 05:51 PM   #13
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Re: My first post........heartache

hi old, so glad you found these boards. i am so sorry to hear about your dad. i lost my mom who had dementia last june and she was 81. i so do feel your pain. it seems family does not help out when it is most needed so dont count on them. i learned that a long time ago. my prayers and thoughts are with you.

 
Old 01-31-2010, 10:35 PM   #14
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Re: My first post........heartache

I think you are right Martha. Some just can't emotionally handle the process. I am married to one. It is not that he doesn't want to ... he just can't do it. Rather than being angry I find it incredibly sad. Yes some just don't want to be bothered but then may turn greedy... but you have to look into the reasons of the other person before complete condemnation. But either way... It's tough on the ones that do because they could really use the help and encouragement.

This disease takes more than just our loved ones.

Love, deb

 
Old 02-01-2010, 04:08 AM   #15
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Re: My first post........heartache

That's for sure. I still don't have the same relationship I had with my sister before Mom got Dementia. I used to fly to the US (I lived in Europe) to visit Mom in New York, and there was no way I would ever be "that close" to Ohio and not to go and visit my sister. Now I live in Indiana, a neighboring state maybe 4 hours between us, and I have never been invited to come and see them, nor have they ever acepted any invitations I gave out to come here. It is sad.

We totally disagreed on Mom. On everything concerning Mom. Harsh words were spoken. I was accused of making things worse by not allowing Mom the freedom to walk around alone even if she got lost, even after Mom forgot what red lights were for. My sister believed that freedom was more important than safety. She also thought I was exaggerating and Mom didn't really have Dementia at all

I am ready to forget all that and be close again, but she isn't. We do speak on the phone every couple of months, and that is progress!

Love,
Martha

Last edited by Martha H; 02-01-2010 at 04:09 AM.

 
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