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Old 07-08-2012, 06:54 PM   #1
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Not Alone

I was researching dementia online and I came across this forum. I am grateful for all those who have posted because it has helped me feel like I am not alone as I care for my grandmother. I am only 26 years old and single.

A little over a year ago, my grandmother was diagnosed with Congested Heart Failure. Because I was the closest relative who could help, I moved in with her. In only one year, she had two pacemaker operations and an AV node ablation. The second surgery took the longest to recover from. As of last Dec. her heart was operating at 20% efficiency. Her second pacemaker was put in last February and because her body was so weak, and I had full-time work, we had home health come in to help for a couple of months.

She was doing pretty good so I felt like it was okay to take a break and go home to visit my family for a little over a week. This was only a month ago from today. Just before I left, she started getting confused about the time of day, which was a little disconcerting, but I still felt okay leaving. She was still able to take her medicines on her own, etc.

When I got back about 2 weeks later, I was in complete shock. A few minutes after I get home, she struggled to find the words to tell me something... something was broken. Finally I was able to guess that it was the washing machine. It wasn't really broken though, she'd just forgotten how to use it. Of course, she didn't believe me. I also noticed that her medicines were not taken right, which really got me concerned.

I began noticing her inability to find the right words or phrases for things happening more and more, but overall she was pretty normal. Every day I noticed something and I had to make an adjustment. The next week or so, because she was getting confused about time of day, I had to change how I gave her her medicine so she wouldn't take them when she shouldn't.

Now, less than a month later, she can hardly dress herself on her own. If she does, she usually puts PJs on top of clothes or wears 10 plus shirts and multiple pairs of pants at the same time. She takes hour long showers where she sits in under the water, even when it's no longer warm. Recently I've started standing by the door to remind her to wash because I don't think she was.

When she eats, it's almost like she has a blank look and she doesn't eat very much. Not much of an appetite, although sometimes she eats multiple times if others are eating something that looks interesting.

Recently she's been kind of rebellious-not wanting to raise her legs up to help with swelling, so much that as soon as we raised them, she lowered them. This morning, she refused to take her medicines saying she didn't need them and that it was ridiculous and that we didn't understand. We finally got her to take them though, but it was hard.

I don't know how many will actually read all of this, but it's nice to know that others know how hard and EXHAUSTING it is to care for someone you love. I believe that she has some form of dementia, hence why I posted it here. I don't know which kind yet, but hopefully when we meet with the doctor this week he will tell us. He gave her a pill to take that is for early dementia, but it hasn't made any difference in the pace of the mental or physical decline. The doctor did say she might also have kidney failure because of all the diuretics. She isn't incontinent yet. I'm just worried about what will come next and how much longer she really has since it seems like she's declined so quickly.

Thanks for reading.

 
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Old 07-09-2012, 02:43 AM   #2
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Re: Not Alone

You arre not alone. There are many of us going through the same or similar things with our loved ones. We are interested in helping in any way we can. Just keep posting and you will get a lot of information from those of us who have gone through what you are experiencing now with your grandmother. You are a wonderful granddaughter.

Aras

 
Old 07-09-2012, 04:47 AM   #3
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Re: Not Alone

You are defnitely not alone. This is much more common than we would like to believe. But when you are trying to do it at home alone... it does seem very isolating.

Any health crisis, anesthesia, or change in routine can cause a down slide in cogntion. You being away for a week would actually give you fresh eyes to see it all a little differently. Do make sure you let her doctor know all of the changes you have noticed.... and make sure that you have some help as well. As grand mother gets worse you are not going to be able to do it all by yourself.

As for your final question (yep read it all!), there is no way to know how long this will last. Rapid decline followed by a period of relative stability is not uncommon. She may continue to deteriorate rapidly. This is not for us to know or decide We just do the best we can, in the moment, and go on to the next one, unti it is done! Glad you have found us and hope to hear more from you!

Love, deb

 
Old 07-09-2012, 06:33 AM   #4
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Re: Not Alone

HI there. Sorry to hear that you and your grandmother are in this situation. It is never easy and it is very hard to be a caregiver. Just because she has declined quickly does not mean she does not have long to live. Sometime dementia has certain ups and downs (they decline quickly then hang around at that level for a while, with good days and bad days and even sometimes a little bounce back) but ultimately the course is downward.

Do you know who has the power of attorney for your grandmother and her health care proxy, if she even has them? The point may come soon when she needs additional help in the house or in a facility and some planning will need to be done.

in the meantime, you are not alone!

Quote:
Originally Posted by Nauvoobelle View Post
I was researching dementia online and I came across this forum. I am grateful for all those who have posted because it has helped me feel like I am not alone as I care for my grandmother. I am only 26 years old and single.

A little over a year ago, my grandmother was diagnosed with Congested Heart Failure. Because I was the closest relative who could help, I moved in with her. In only one year, she had two pacemaker operations and an AV node ablation. The second surgery took the longest to recover from. As of last Dec. her heart was operating at 20% efficiency. Her second pacemaker was put in last February and because her body was so weak, and I had full-time work, we had home health come in to help for a couple of months.

She was doing pretty good so I felt like it was okay to take a break and go home to visit my family for a little over a week. This was only a month ago from today. Just before I left, she started getting confused about the time of day, which was a little disconcerting, but I still felt okay leaving. She was still able to take her medicines on her own, etc.

When I got back about 2 weeks later, I was in complete shock. A few minutes after I get home, she struggled to find the words to tell me something... something was broken. Finally I was able to guess that it was the washing machine. It wasn't really broken though, she'd just forgotten how to use it. Of course, she didn't believe me. I also noticed that her medicines were not taken right, which really got me concerned.

I began noticing her inability to find the right words or phrases for things happening more and more, but overall she was pretty normal. Every day I noticed something and I had to make an adjustment. The next week or so, because she was getting confused about time of day, I had to change how I gave her her medicine so she wouldn't take them when she shouldn't.

Now, less than a month later, she can hardly dress herself on her own. If she does, she usually puts PJs on top of clothes or wears 10 plus shirts and multiple pairs of pants at the same time. She takes hour long showers where she sits in under the water, even when it's no longer warm. Recently I've started standing by the door to remind her to wash because I don't think she was.

When she eats, it's almost like she has a blank look and she doesn't eat very much. Not much of an appetite, although sometimes she eats multiple times if others are eating something that looks interesting.

Recently she's been kind of rebellious-not wanting to raise her legs up to help with swelling, so much that as soon as we raised them, she lowered them. This morning, she refused to take her medicines saying she didn't need them and that it was ridiculous and that we didn't understand. We finally got her to take them though, but it was hard.

I don't know how many will actually read all of this, but it's nice to know that others know how hard and EXHAUSTING it is to care for someone you love. I believe that she has some form of dementia, hence why I posted it here. I don't know which kind yet, but hopefully when we meet with the doctor this week he will tell us. He gave her a pill to take that is for early dementia, but it hasn't made any difference in the pace of the mental or physical decline. The doctor did say she might also have kidney failure because of all the diuretics. She isn't incontinent yet. I'm just worried about what will come next and how much longer she really has since it seems like she's declined so quickly.

Thanks for reading.

 
Old 07-09-2012, 07:22 AM   #5
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Re: Not Alone

we are all in this together, and yes I too read your post, all of it, it is not as long as some of the ones I have posted, you have found a great place to ask questions. Has grandma been tested for a UTI, it sounds like something may have happened while you were away. Do you get some help from your family, this just does not get any easyier. If you have been going though some of the postings on here you can see you are in good company. Stay with us, post often, scream, cry, rant we are here for you , welcome to planet alz.
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Old 07-09-2012, 10:30 AM   #6
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Re: Not Alone

I was told heart failure has 5 years of survival rate but it is not definite. However, as Grandma gets sicker, the more distress she has, the more the heart will bear the burden.

I suggest that you hire part-time caregivers to help Grandma. It is hard work for one person. The dementia drug can only delay the symptoms but does not stop the decline.

Hope Grandma will get comfort care at this point.

Hugs,
Nina

 
Old 07-09-2012, 11:04 AM   #7
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Re: Not Alone

Quote:
Originally Posted by Nauvoobelle View Post
I don't know how many will actually read all of this, but it's nice to know that others know how hard and EXHAUSTING it is to care for someone you love.
You are definitely alone, and yes many read your post all the way thru. My wife is suffering from something and I still don't know for sure what. In the meantime, I sure burned up a lot of kilobytes of this forum space. Not only do people read my drivel, but they have been instrumental in propping me up when I was feeling completely isolated, me against the world.

 
Old 07-17-2012, 09:35 AM   #8
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Re: Not Alone

This truly is a blessing. Having a place to go where you can post your feelings without somebody saying, " It's going to get better." Well meaning, but I know its not going to get better. It's going to get much worse. In 2005 my grandmother was diagnosed with Dementia. She passed in 2009. We all assumed my mother was depressed and stressed caring for grandma. Who wouldn't be overwhelmed? In 2007 however my mom told me she thought she was in trouble. She knew what she wanted to say but couldn't get the words out and they came out wrong. I told her it was stress. Her "stress" got worse, and the doctor treated her for depression. In 2009 it was much different. She wouldn't join or couldn't follow conversations. She had hallucinations. Still my father cared for her saying it was depression. "Just gotta find the right combo of pills"
My father suddenly passed away Jan 20, 2012. I brought my mom to live with me and quickly knew I was in way over my head. She never slept at night. I helped bathe and dress her. She cussed me and my children, and took a whack at me. Got her to the hospital because she was hallucinating again and they told me within 5 minutes and a brain scan that she had Vascular Dementia well into stage 5.
She is in a wonderful care facility now. It's July 2012 and she is now in Stage 6 with recurrent UTI. Im sorry this is so long but I need to get it out. She barely speaks. Doesnt even look at me now. I have to force myself to go see her. The pain of losing her so slowly to this horrible disease is followed by my anger and guilt. WHY didnt my dad ask for help? How long will this terrible nightmare go on?

 
Old 07-17-2012, 11:11 AM   #9
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Re: Not Alone

Ksefitz,
I am sorry your Mom has Vascular dementia. It is hard. I am glad she got a good place to go. Even if you dad had asked for help, she would still have gotten worse downhill. It is good that you can help her. Usually it is hard for a spouse to deal with it. So adult kids usually take over. It is nothing new. However, it is difficult. It makes you get depressed. When Mom is not the usual Mom, it is heartbreaking...
Please know that you are doing the best and please don't blame Dad. It is always hard to detect in the very beginning and Dad might be in denial. It is normal for Dad to miss it. I know it is hard when Mom does not speak. Be glad that she is content.

Hugs,
Nina

Last edited by ninamarc; 07-17-2012 at 01:12 PM.

 
Old 07-17-2012, 12:46 PM   #10
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Re: Not Alone

I agree that it is nice to go somewhere that you don't hear... "Ahh, It will get better!"... because you are right!... it doesn't. It gets different and we find ways to cope but it truly doesn't get better until it is over. Then we are changed for life. In a good day or a bad way... depending on how we handle ourselves through this time.

And I have learned to never say it is as bad as it gets because it can always take a downward turn. Dad was diagnosed with VD. How much worse could it get? Mom's diagnosed with AD? Uh huh and the same weekend FIL fell and broke his neck ended up in a halo brace. Then MIL with her undiagnosed dementia. How much rose can it get.... times four! Dad, with his VD answered the big question for me. When I ask "Why me?"... his reply was "Why not?" Those two simple words from my father with his AD have gotten me through a lot.

So I have spent the last 15 years up to my eyeballs in dementia. Mom is the last and there is actually a glimmer of light at the end of the tunnel. My daughter graduated with her masters in May. Maybe now I can spend some time enjoying my most favorite person... She's leaving for an extended stay in England on August 24. She will be working there for an undetermined length of time..... maybe forever. Oh well.... now I just ask... "What next!"

Love, deb

 
Old 07-17-2012, 01:16 PM   #11
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Re: Not Alone

Deb, hope your daughter will be back to see you!
Indeed it is a long way to go. The elders get worse slowly. Then one day they are gone.
Sometimes even when we are aware of this, we still tend to take it as a surprise when they die. It is a loss and life will be different for us. My late FIL's death was kind of a small surprise on the timing, but not too shocking as my late FIL was in bad shape.
Guess my husband and his half-brother still wished their Dad were better. I think it is normal for family to feel this way. It will take time to get over with the loss for my husband. Yet it had been a long goodbye.

Nina

 
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