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Old 07-03-2012, 01:55 AM   #1
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No clue what to do

My grandmother was just hospitalized over the weekend from what appears to be a sudden and severe progression of dementia and alzheimers. They have her on constant surveilance with monitors to alert them if she tries to get up while they are running a lot of tests. The tough part is that she is in the states while I am in the UK currently.

I have not been dealing with it too well and searching on google has only made it worse. Finaly talked to my gf and best friend last night as I noticed I was becomming very angry about very minor things. She and I were very close so I am having a lot of trouble comming to terms with it and accepting it. Waiting for answers to come from back home isn't helping either.

My grandma was sharp as a tack with an incredible memory. On top of that she was a incredibly talented cook, gardener and painter. Over the past few years she would have breif moments of memory loss or odd behavior but it was very minor and doctors said that it could be very early stages alzheimers but wasn't anything to cause great concern. Wasn't easy then, but as time whent on the family just accepted it and any issues with memory were minor. This sudden and drastic shift has me terrified.

Stumbled on this board and figured I would give it a shot. I have trouble asking for help, but well.......I can't do this alone. Broke down on ***** with my gf last night.

-Cameron

 
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Old 07-03-2012, 08:15 AM   #2
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Re: No clue what to do

Cameron, we do understand your feelings. First I will say that the doctor was unfair in his diagnosis. Early signs of Cognitive Decline/ Alzheimer/ Memory loss is something to be concerned about... ALWAYS. It is not a natural part of aging. It does not stand still but is progressive.

While your grandmother was in her familiar surroundings life was easier for her even with the dementia. She used her long term memory to do what needed to be done or find ways to compensate. You notice the occasional moments that she can not compensate. As time goes along she becomes less and less able to deal with daily situations so she will withdraw. Then something happens, such as a medical crisis and hospitalization. She is incapable of handling the new and different that she is thrust into. Being sick also takes away the ability to cope. What you are seeing is the true depth of her dementia at this point. It can come as a shock if you are not prepared... and being told it was nothing of great concern did not prepare you for what will happen.

Not being close to your grandmother physically makes it even more difficult. You have not been able to see the subtle changes along the way. Now you are not in a position to be there and I am sure you are struggling with the need to be there. GO when you can

This disease is not easy to accept. It is ugly. When you first start researching there is nothing there that you want to know. It is a degenerative brain disease that takes our loved ones away from us piece by piece. There is no treatment or cure at this time. There is no hope and encouragement. I am glad you are here because each of us here are going through the same thing with one of more loved ones.

I was right where you are not at one time with my Grandmother. I too was confused and angry. It was my Mom who helped me accept what was happening. Since then I have been through my father's Vascular Dementia and now my Mom's journey with Alzheimer's. I can tell you, as difficult as it is, the more you know the better you be able to deal with what is going on. Knowledge is power. That leads to acceptance and puts you in a place where you can get the most out of what is to come. Keep typing, asking your questions, and looking for support. I am sure other will chime in. I regret that you needed to find us here.... but I am so very glad that you did. Know we are here to support you in this journey..... and we do understand.

Love, deb

 
Old 07-03-2012, 08:31 AM   #3
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Re: No clue what to do

Thank you! Currently my head is in all directions but will continue to ask questions and what not here. The truly painfull part about this is that 2 years ago I lost one of my Aunts and never had the support from my ex-fiance which resulted in me cutting off from everyone. Asking for help is the most difficult thing for me to do. Having never properly dealt with the previous loss I feel is having an impact on me here. Find myself running to the latrine throughout the day at work to fight back the tears. Thankfully this time, I have an amazing gf who is being extremely supportive and keeping in touch with me very frequently (even though she is stateside as well). I do plan on going back to the states for a bit, but with being in the military now it is not easy and still dealing with previous debt issues so just have to put aside a little at a time to save up. I am scared and feeling helpless just waiting for information to be passed on from the doctor to my family then to me. Again, thanks Deb.
Edit : Last I heard was it could possibly be Dementia with Lewy Bodies. Still awaiting results from all the tests.

Last edited by Cberkner; 07-03-2012 at 08:43 AM.

 
Old 07-03-2012, 08:55 AM   #4
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Re: No clue what to do

First, thank you for your service!! Being away is difficult, especially when there are family issues, and I want to say that I appreciate your sacrifice. There is nothing wrong with asking for help. Sometimes asking for help is the bravest thing you can do. Knowing when we need support and information is an important part of getting through a situation. Tears are ok. It is our way of cleansing our soul. It is releasing all the emotional turmoil that we tend to hold inside. I am glad that your girlfriend is being supportive. And now you have support from here as well.

I will have to agree that the waiting at a distance is probably the worst part at the moment. Not knowing and not being there only compounds it all. Just hold on and the information will come. Knowledge is power and once there is a diagnosis (I now see your edit) you can start investigating and learning. Is there a possibility of requesting a return for family illness through the military. I am not sure what branch you are in or where you live in the US. But it might be worth asking.

Just know you can and will get through this.... with a little help from your friends

Love, deb

 
Old 07-03-2012, 09:06 AM   #5
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Re: No clue what to do

Sorry that your grandma has dementia! Thanks for your military service! It must be hard to know about these things from a distance. Sounds like grandma has people who care for her now? Who helps her now? Your parents? Other family members? It must be hard that you cannot help. The thng you can do is to show support for the caregivers who are near her right now.
Yes dementia is scary as there is no cure and she will get worse.
It is a slow disease and she may still survive for a long while. Also in this disease, every time they decline, they sometimes fall sick and go to the hospital. Once stablized they can go home after the decline. Often every 6 months they decline a little more. Hard to see the changes. You may want to pick up any book about dementia and understand the progress. The hardest part is the progress. Sometimes we have been there so long and got used to it. My FIL has Alzheimer's and he is very sick at this moment. Hope my FIL will pull it through.
I sure hope your grandma will go home after a few days!

Take care,
Nina

Last edited by ninamarc; 07-03-2012 at 09:10 AM.

 
Old 07-03-2012, 01:07 PM   #6
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Re: No clue what to do

One second I am in tears and the next I am just sad. So easily irritated to. . Your responses have definitely helped a bit, just really hurts knowing there isn't any hope. Terrified of the day that she wont recognize me. We have been through a lot and she has been a big part of my life. I know she is getting older and that one day she will pass on, but I didn't want it to happen like this. Want her to be able to remember her family.

 
Old 07-03-2012, 02:11 PM   #7
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Re: No clue what to do

I think instead of thinking losing hope, the family can try the best to spend more time with the loved ones. No one will live forever and she would have to go one day. Dementia is harder because she may behave differently and the family would feel that it is a slow goodbye. However, do try to see her on holidays and try to talk to her as much as possible. She can still feel that family is familiar and they are her buddies!
My husband is still my FIL's familiar son and he has been struggling with dementia since 2004 or earlier.
We all have to die. It is just that we cannot choose how we will die... Even though grandma may forget more stuff, her loss of memory is not 100%. She will always know who are familiar- the family.

Take care,
Nina

 
Old 07-03-2012, 05:43 PM   #8
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Re: No clue what to do

its such a horrible disease my heart goes out to you. try not to project i know easier said than done.

 
Old 07-03-2012, 06:38 PM   #9
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Re: No clue what to do

Cameron, you need to know the truth about this disease but do not give up yet. You are grieving the loss of your grandmother while she is still with you. This is what this disease does. None of us want this for our loved ones. Just try to find a way to see your grandmother and enjoy what moments you can get with her. She was a huge part of your life and that will never change. Even if she doesn't know who you are...you know exactly who she was and what she was to you. Hold that in your heart for now. Hang in there. After she recovers from her hospital stay, if you can't find a way to get home, find a way to teleconference over the computer with her. You need to see her

Love, deb

 
Old 07-04-2012, 03:25 PM   #10
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Re: No clue what to do

Thank for all of your support. The past two days have been a bit easier. While I have not completely come to terms with it, I have been managing better. Keeping in touch with the family as I can and finding ways to get my mind off it for a little so that I can keep myself from falling apart. Think I am going through a bit of denial as well, I know I need to call my grandpa but have been unable to dial his number. I freeze every time I go to hit the call button. I still keep dialing it even though I haven't found the courage to go through with it. I don't even know what to say. I cannot begin to imagine what he is going through. She is his only wife, for over 50 years. She is his soul mate. I used to write a ton of poetry and never had issues finding words to help someone in need or through a tough time. I can find no words for this. Every day is a battle for me.

 
Old 07-04-2012, 05:49 PM   #11
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Re: No clue what to do

You dial the number and say... "Hello Grandpa"! The rest will come. We tend to over think bad situations that are directly related to us. We can see more clearly when it is somebody else That is why it might help to step outside of your emotional self for a moment and look at it objectively. Grandpa would love to hear from you. Yes Grandma was his wife of 50 years but you are a dear grand son. You may be just what he needs.... and he may be just what you need. I can tell that your grand parents are very important to you. As for the denial... sometimes that holds us back because hearing it and talking about it makes it real. It is real and best to just jump in. Staying back is not going to make it any different. It just piles on a whole new layer of emotions to deal with. Glad you are staying busy and doing a little better. Time and acceptance will help you adjust. But most of all talking to Grandpa may help even more. It will give you a closeness that will help.

Love, deb

 
Old 07-05-2012, 09:56 AM   #12
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Re: No clue what to do

Cameron, Can Grandma walk or talk? I have no details of her stage so I am not sure how your Grandpa is coping. Is she at home or in a nursing home? Is there anyone else there to help Grandpa?
Also it is normal for the staff in the hospital to "restrict" her a little bit for testing. My FIL with severe stage of Alzheimer's also hates hospital and would pull out the tubes given moderate stage. So it is nothing weird.

You should cherish each moment. She will get worse in time but do appreciate if she can still talk or walk now. Even though she may be very bad in her memory loss or confusion, she still needs someone to care for her or talk to her.
You sound like she is losing the battle now and is dying tomorrow! Give some time for this. Deal with it one moment at a time. One day at a time. Appreciate that she is not bedridden or that she is eating well and etc. See the positive side. See life like All4Mom said. See that she is LIVING now. Deal with the life now. She is not dying literally.
You also have a problem thinking she forgot you. This is actually kind of on our ego's side that we want the elders with dementia to remember us or that we want them to reason with us again. What about her fear of losing her memory? Her confusion and her agitation. Deal with that and comfort her and make her less confused by saying comforting stuff to her. Treat her like a good old friend and she does not have to know you in every detail.

If you have some issues with the family and feel insecure now that she may forget you completely, you may want to seek for therapy to talk about it. It is common for family to feel depressed. Talk to someone who understands dementia. Don't just get angry with it. Also, she may not forget the families overnight. It is a slow process and she would behave strangely but it is not like she thinks you are a stranger right away even though she may not recognize you. Also you didn't say how much she forgets now so take it one day at a time. She may think of you as someone else in the family when she sees you, for example. Don't freak out. Just talk to her as usual. Distract her if she is stuck with the memory loss. Guide her in the conversation. Talk about happy things or objective stuff like the nice house and etc. We all have to learn to deal with it once we know the person forgets more.
I wrote about this memory loss and family in the other thread. It is not like 100% and sometime it is on and off. e.g., my FIL forgot his elder son whom he rarely saw for 40 years. He called him the cousin for a long while and then he knew him again when he moved to the NH. Now he forgot him. It takes a long time. Yes he forgot the elder son strictly speaking, but in his brain, somewhere there this person is important. He forgot his younger son (my husband) but he still calls his name or likes his presence and takes it for granted as family. Eventually he will forget us but we are always familiar to him as "family" or "colleagues".

Hugs,
Nina

Last edited by ninamarc; 07-05-2012 at 11:13 AM.

 
Old 07-06-2012, 01:12 AM   #13
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Re: No clue what to do

Finaly received an update from the family. My grandpa seems to be in good spirits. What I have been told is that she was diagnosed with PMR (Polymyalgia Rheumatica). Apparently it can cause a sudden onset, but they have started treating her and said they noticed a small improvement. My grandma was able to talk and walk, the hospital would not let her get up though. She knew who the family was but with some bouts of memory loss but did not know where she was. She was "picking up" objects and seeing people that were not there.

Edit : Dementia has not been rules out and other possibilities have been added. Cerebral Vasculitis or hallucinations linked to UTI. She has had no hallucinations since Monday. No definitive diagnossis.

Last edited by Cberkner; 07-06-2012 at 03:31 AM.

 
Old 07-06-2012, 09:29 AM   #14
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Re: No clue what to do

UTI... ding ding ding If she has a UTI I would put my money on that being at least part of the cause of the bizarre behavior!! It is amazing how it can temporarily affect the cognition of an older person. Without other underlying causes... they will usually return to near normal. Hang on to hope please...

And glad your grandfather is in good spirits I am sure that makes you feel better. Stay positive! ... and if you have not done so... call your grandfather!

Love, deb

 
Old 07-06-2012, 09:30 AM   #15
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Re: No clue what to do

Glad your grandma is now stable and out of the woods! Like I said, it is not so bad if you face the music. Hope Grandpa is feeling good. You can try to ***** them if you want to see them in webcam.

Regards,
Nina

 
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