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04/30/2011 04:27 PM

HI I am new, and just lost

WIcaregiver
Posts: 3
New Member

Hi i am new here. Have a companion, who is not diagnosed, life is so just unimaginable. I am a professional care giver too and am just stunned that in other situations I know the right answer, what to say, what not to say. how to redirect and now that it is so personally at my door it is all different now. ramifications from behaviors have isolated most of our friends and it is just easier for them to just distance themselves. There are not words that I can say to discribe, the vacuume,the fear the aloneness,and all the conversations and decisions that must be made and cannot be denied or avoided for much longer. Sorry to dump I just wanted to say hello.
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04/30/2011 05:11 PM
lovingyoungwife

Hello and welcome to our group. You have spoken so much truth in your introduction. It is so different when the person you are dealing with is a loved one who you are with practically 24/7. I don't really know why it is, but this is a story that I hear repeated over and over and experienced myself, former friends distancing themselves. I think it must be that they just don't know what to say or what to do. Perhaps it is a grim reminder that anyone could find themselves in this same sad state. There is so much that is not known about Alzheimer's, so much to learn. Often it is that fear of the unknown that causes people to back off. But one thing you will find about our group here, we all understand what you are going through because we have all been through it ourselves or are going through it now. You will always find an ear to listen and a cyber shoulder to cry on here.

LYW


04/30/2011 07:15 PM
WIcaregiver
Posts: 3
New Member

Thank you so much for your words. It is really something someone cannot understand till they are in those shoes. If I could just get him properly diagnosed, tested and be able to benifit from some of the medication that is available now. Sadly with the medical privacy laws, and the denile in his estranged family and not being able to talk to the Dr it is falling on deaf ears, Not to mention the financial wreckage he creates when it comes to money, a check book or a charge card.

I never expected this, It is not what I signed up for and thought as long as we were fighting together we could conqure anything. But fighting against him FOR him is something i never invisioned. Sometimes it is easer to just to take prescribed medication properly, instead of having difficut conversations, and decisions. It is so hard because whe he sees people or the Dr. he can act like everyone for a period of time and knows what to say, that just leaves me frustrated that they are so blind and cant see it when everyone who he interacts with on a regular basis can see it nad has been on the recieving end of his erratic words and mood.

I am long past the point of making apologies to our friends and family, and try to keep events rather short and in events and places where I do not have to be woried about what he will say and do. PLEASE, I AM SORRY I DO NOT MEAN TO RAMBLE ON AND ON.


04/30/2011 09:15 PM
lovingyoungwife

Hey, don't ever feel like you are just rambling on, that is what we are here for. Everyone needs someone to talk to, if we didn't have that we would most likely go insane. There will be others popping in and out also, I just happen to be the one available right now...... It is a shame that he won't accept the need for medical help as early diagnosis is very important for quality of life with someone who has AD...... I understand about being concerned about what he might say or do as I felt that way in the beginning with my husband. But I latter learned for my own peace of mind to just quietly explain to anyone who might be involved with us about the AD. After telling them of the problem I just left it up to them. They then knew the problem and they would just have to understand. Those who are really friends will understand and those who don't really don't matter anyway, when all is said and done.

04/30/2011 11:35 PM
tony36
tony36  
Posts: 1408
Group Leader
I'm an Advocate

Hi WI and welcome to our group. If you need to dump this is the right place to do it. We have all been through it with all the frustration and feelings of helplessness. You may have just found, as I did, that those you thought were good friends suddenly deserted you or even kept asking what could they do and when I said all I needed was for them to visit............they never did. But on the other hand I did find new friends who approached of their own accord and asked how they could help ........... and did. In one case I had to ask the person her name to introduce her to Brid when she came to sit with her. Sorry to say things can get worse but they can also improve eventually as the patient accepts the condition and the help. If you look up our resources you will see the seven stages and some hints and tips which may help but be aware that every patient is different also and you have to take each day one at a time.

Please note that while the doc cannot talk to you, you CAN talk to the doc. You are his eyes and ears because the patient will not give the doc the proper information. Put something in writing to the doc and let him know what is going on.

Tony


05/01/2011 05:11 AM
alznotwell
Posts: 1145
Group Leader

Hello WIC. I'm glad you found our group. We all need outside support when AD appears in our family, so don't worry about rambling. We've all done it when the pressure and the panic gets to be too much for us.

Feeling responsible for someone else without having authority to act for them is an excruciating place to be. We as a society have created a problematical situation of redefined relationships and as yet are not too successful at coping with them by law. Don't waste your energy blaming the medical establishment. They are as subject to the resulting conflict as we are. Being caught up in a family relationship, whether sanctioned by law or not, is not a place any outsider wants to be, particularly with the American propensity for lawsuits.

Tony's suggestion of writing to the doctor is a good one. Doctors are not clairvoyant; they act on what they see in their examining room. My mom has had AD since 1998, and until the past year she has still been able to pull herself together long enough to fool most people, including doctors, for a short time. Make your letter as short and to-the-point as you can, because doctors are busy, so at least in this case try not to ramble! Even though the doctor may not be able to acknowledge your input, it will still help him with his diagnosis, and he may get your partner on medication for AD without having to consult with you face-to-face. Be as supportive of your partner as you can, and he may start asking you to go to the doctor with him. Unless you get Power of Attorney for your partner's health care, and it sounds like that is not possible right now, providing background information is about all you can do at this point.

The second thing you should do is separate all your finances from that of your partner. People with AD quickly lose their ability to manage finances, and if you have commitments in common, they can ruin you financially as well. If your financial situation is complicated, you may need to consult with an attorney to help you sort it out.

Get going on the things you can do, taking on the most important problems first, and that will give you more energy and confidence for dealing with other problems as they crop up. Talk to us, or ask us questions any time you need to. We will certainly try to help. ANW


05/04/2011 08:00 AM
evonne
Posts: 52
Member

Hello WI, I also very much identify with what you have been saying. My husband also denies that anything is wrong - except that he says I don't treat him the same anymore. It breaks my heart to loose the one I thought I'd share my retirement years with. And, just like your loved one, my husband acts normal enough in front of other people that no one really knows what it's like for me (except our adult children know a little). It's not like seeing someone with dementia on TV. I did go to his doctor secretly. I wrote down things I saw (several pages) and gave to him. When we moved, and now he has a new doctor, I found the opportunity to go talk to him too. This new doctor has somehow got my husband to go to a memory clinic for testing. His tests are today in fact. I'm nervous, cause I don't know if they will be able to detect the defects that I see, and make a diagnosis. I'm hoping so. I'm hoping that at some point my husband will be on the same page with me, cooperate, and let me help him. Otherwise I fear the battles that may be coming. But, I don't look too far ahead. We have to just live day by day, and keep loving them. We have raised 8 children, one has died of heart problem. This Alz. and slowly loosing my life partner is the hardest thing I've had to deal with. Everything else we faced together. This, I have to face alone. But, we here are not alone. I take encouragement from reading other posts, and hope you will too. When you feel you are going crazy, just read what others have posted and are going through. Also, find a good friend or family who will encourage you, even if they don't understand what you are going through. You can also work on getting Power of Attorney. I had to trick my husband into it. Do whatever it takes. In the future you will need it.

05/06/2011 07:12 AM
primetimer
 
Posts: 40
Member

Hi = I can relate to most everything you wrote, except my husband knows what is going on. His mom had alzheimer and didn't know anyone for over 3 years. She died 4 months ago.

It is like a knife going thru my heart when he calls me to the computer and says he forgot how to turn it off. He is still working at Home Depot but I don't think for much longer. The worst moment will be the first time he doesn't know me.

It is just wonderful to know that others are going thru the same thing and helps me live day to day.


05/06/2011 07:16 AM
primetimer
 
Posts: 40
Member

Hi I feel so lost also. My husband has AD and we try to live day by day. Sometimes I feel so sick inside but it really helps to correspond with people like you.

05/06/2011 07:52 PM
birdlover
birdlover  
Posts: 370
Member

Hello WIC and welcome!I can't think of anything to add but I wanted to let you know I'm here and am willing to listen anytime.PM me if you want to,I'll answer any questions I can.Hugs,Gina
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