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Old 10-17-2012, 10:28 AM   #1
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Question Dementia and the Caretaker

Hi, I'm new to this health board, but it sure has encouraged me! It is good to know that others are also plodding through this dilemma. Just yesterday our neurologist pretty much confirmed that this is dementia of some sort that my husband is dealing with. It made me sad, and yet at the same time happy to have some sort of confirmation. I thought it was just me getting less and less patient with my husband! You are all kind to take time to explain your situation and let us know that we, too, can cope in our own ways. Does anyone have any good advice on dealing with the frustrations of being a caretaker? Or any help for my poor daughters who still live at home and are always finding places to disappear to?! It is sad to see my family disperse because nobody wants to be around Dad anymore.

 
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Old 10-17-2012, 11:28 AM   #2
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Re: Dementia and the Caretaker

Turks welcome to the board and I am so glad you decided to post. Also glad that something you found here has made your journey a little more enlightened. I am so sorry that you are on this journey with your husband but glad you found us!!

I do understand your feelings after his diagnosis. It is scary. It is sad. But at the same time it gives you validation and explanation of what is going on. It lets you know there is a medical reason for what you are going through. Just knowing it is not him being intentional difficult and you being impatient is a relief.

Once you know that he is not "misbehaving" intentionally, it is something beyond his control, and it has nothing to do with you, then you will be able to deal with it a little better. Yes it is still frustrating but you can always go back to the fact that it is a medical problem and not intentional or directed at you! It does lower the level of frustration. Then you learn little tricks along the way to make the situation better like.... Do not argue!! You learn to divert his attention or distract him rather than confront. You find that little pleasure that will take his mind off the frustration he feels trapped in a brain that is not functioning right. Dad's little pleasure was ice cream. If I could get eye contact with him and then present a bowl of Butter Pecan ice cream... everything else in his world vanished. You will figure out that it is all about the moment. What he was upset about early ago is gone. If you can refocus his attention you win. You will figure out that routine is his friend. Anything out of the ordinary will upset him so follow his schedule as much as possible. You will figure out that full disclosure is not always a good thing. If he has a doctor's appointment wait until that morning and help him dress and then go to the car. The less time he has to brood on that kind of thing the better. If something happened earlier... it is gone from his mind. We are the only ones that hold on to those things so we have to take a lesson from them on this one and let it go as well. Stay in the moment with him, keeping his inabilities in mind, while trying to maintain his abilities.

Beyond that you HAVE to have help. The sooner you start the better. If your children are old enough they do need to spend time with Dad and get to the point that they can let you go out once in a while to do something you need or want to do. You may want to introduce a "friend" that can stay with him while you get some much needed sleep or time away. If there is an adult day care in your area maybe he can "work" there a few days a week. Find a facility that has respite care. That way you can spend the weekend with the children. All this will get him accustom to being without you which will serve you well later on.

As for the children, be honest with them about what is going on with Dad. Without that diagnosis they are probably feeling the same way you were. Dad is just being difficult and they would rather avoid than deal with it. Once they know about the disease and how it is changing Dad, they may have a very different view. You need to tell them that now is the time to spend time with Dad. It will only get worse and they need to enjoy those moments of joy they can have with him now. I bet knowing it is a disease and not just Dad being strange will help there

Keep posting. It is a long journey with many difficult twist and turns but it can be done. The fact that you have pushed for a diagnosis and are here says you are ready for what is ahead. Hang in there

Love, deb

 
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Old 10-17-2012, 12:20 PM   #3
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Re: Dementia and the Caretaker

Thank you so much for your fantastic reply. You are very kind to take time to give me some very useful advice. I do see the wisdom in much of your advice, and I will keep watching for those opportunities as they arise. The situations you describe are exactly as you said, and I just need to take advantage of the short memory to keep from starting any upsets. Yes, I have had to learn to slow down on the reactions I have myself! I see myself being part of the problem. Thank you for the reminders.

As far as the children go, I have been talking to them all along, but without any sure diagnosis, they couldn't understand the changes. Now I think this will make it easier for them to accept. They were actually the ones who offered to help me figure out ways to get out of the house, too. They could tell that I need some relief. But they didn't want to to be the ones. Maybe this will give them a different viewpoint. At this time, I do think letting someone else watch over him would be nice!

Thank you, thank you, for your encouraging and wise words. I look forward to more contact with others who don't mind listening.

Laura

 
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Old 10-17-2012, 12:23 PM   #4
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Smile Re: Dementia and the Caretaker

Thank you so much for your fantastic reply. You are very kind to take time to give me some very useful advice. I do see the wisdom in all of your advice, and I will keep watching for those opportunities as they arise. The situations you describe are exactly as you said, and I just need to take advantage of the short memory to keep from starting any upsets. Yes, I have had to learn to slow down on the reactions I have myself! I see myself being part of the problem. Thank you for the reminders.

As far as the children go, I have been talking to them all along, but without any sure diagnosis, they couldn't understand the changes. Now I think this will make it easier for them to accept. They were actually the ones who offered to help me figure out ways to get out of the house, too. They could tell that I need some relief. But they didn't want to to be the ones. Maybe this will give them a different viewpoint. At this time, I do think letting someone else watch over him would be nice!

Thank you, thank you, for your encouraging and wise words. I look forward to more contact with others who don't mind listening.

Laura

 
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Old 10-17-2012, 12:43 PM   #5
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Re: Dementia and the Caretaker

You are welcome Laura and I am sure we will have many more conversations as time goes one. I remember being where you are now There were some wonderful people than that gave me sage advice and made a difference in my thought process. Dementia is so far out of the everyday normal that we have to through out all our preconceived notions in order to deal with it.

The kids are right, Mom does need a break. A regular break and long breaks to renew your energy on all levels, physically, emotionally, and spiritually. Please do NOT fall into the mind set that you are the only one that can do this for him. Your responsibility is to make sure he has adequate care from somebody.. not necessarily yourself. Maybe now that you have a diagnosis the kids will be able to understand a little better what is going on with Dad. If there is a support group in your area it might be a good idea for you and the kids to go. Hearing face to face the experiences of others can make a huge difference... as hearing the stories here as well. It does help to know that you are not the only one going through this and it is common to the disease and not just Dad being difficult.

As for you being part of the problem... do not think that way. You are doing the best you can with the information you have in the moment. When we know better we do better. This is the ultimate on the job learning experience and we all stumble in the beginning until we find our way. There is a huge learning curve and you are running right along that curve with haste. Recognizing that we can do a better job and have things to learn is good but the problem is this frustrating hideous disease that none of us knows how to deal with until after we have been faced with it.

The best thing you can do is to keep your own thinking in line. There is a great book that helped me a lot. "Coping with Alzheimer's: A Caregiver's Emotional Survival Guide" by Rose Oliver and Frances Bock explains how to control your own mind set to put you in a better place to take on this frustrating job. Limiting negative thinking is a huge help. If nothing else, he will tend to mimic your emotion state. He can pick up on non verbal cues better than he can understand what you are saying. So if you are calm and positive, he will more likely be the same. It is not 100% but it sure helps. The days you are at wits end are the days he will be at his worst! As with the British when they were being bombed into oblivious.... "Stay calm and carry on"!

Love, deb

 
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Old 10-17-2012, 12:49 PM   #6
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Re: Dementia and the Caretaker

Oh, Thank you, Deb. I appreciate you standing by and being patient as I learn and respond to this new "class" I'm in! Just a few moments ago, I broke one of my new rules! Stay Calm! I got upset about the crazy neighborhood cat outside the window again, bothering my kitty. And that upset my husband. He told me to get out of the room and he'd take care of it. Just gotta let it go and move on!

Well, I try not to stay on the computer too much, but this is certainly a help to me. I read your second note, and I really like the extra advice. Thanks so much for the support!

Laura

 
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Old 10-17-2012, 12:51 PM   #7
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Wink Re: Dementia and the Caretaker

Oh, Thank you, Deb. I appreciate you standing by and being patient as I learn and respond to this new "class" I'm in! Just a few moments ago, I broke one of my new rules! Stay Calm! I got upset about the crazy neighborhood cat outside the window again, bothering my kitty. And that upset my husband. He told me to get out of the room and he'd take care of it. Just gotta let it go and move on!

Well, I try not to stay on the computer too much, but this is certainly a help to me. I read your second note, and I really like the extra advice. Thanks so much for the support!

Laura

 
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Old 10-17-2012, 02:16 PM   #8
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Re: Dementia and the Caretaker

These things will happen because we are not super woman but human. But you got a first hand look at how our emotional state is mirrored back to us. You got upset about something that has nothing to do with him and he was right on your heels getting upset along with you. But he does not have a clue what he is upset about so he will strike out at whatever is there... YOU! Compared to his anger, the cat is minor. At some point we get that it is all about them. Everything that happens in their presence is directed at or about them. They don't have the ability to understand it's not about them. You are upset, it is at him or related to him in some way. On the flip side we have to understand that what they do is not about us or directed at us. It is about the disease and the confusion in his head. We are in control of not only what we do, but how we react to what we receive from them. What we are not in control of is what they do, say, or think. The difference is that they can not control what they do, say or think so that puts a double burden on us. We are in control and they are not. Before he was in control of what he did so we turned life on it's end with this diagnosis but once you understand... you can do this... with practice and a little help The nice thing... by supper time the cat and all that followed will be gone! Stay calm and carry on!!

A quick word about guilt. We tend to feel guilt when things don't go right. We want to blame ourselves for not being able to fix everything including this disease which has a mind of it's own. Don't fall into the guilt trap. Guilt is reserved for things that we do intentionally to harm someone else. Nothing you are doing falls into that category. So leave the guilt for somebody else. As for being on the computer, if he is quiet and you need some relief, it's ok to take that time for yourself!

Love, deb

 
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Old 10-18-2012, 07:23 AM   #9
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Re: Dementia and the Caretaker

Thank you again, Deb. I am going to re-read all your posts because they really make a lot of sense to me. Everything you say is pertinent to what I'm dealing with now. Things are upside down, like you said! It used to be that I turned to my husband for everything. He knew the answer always. He always did the right thing. Now it's my turn to grow up and be strong and wise. It's been a process I've already been working on, even not knowing what I was dealing with. Just saw the need. But now I see that it will be a life change, and it will not go back. Thank you for the explanations, so that I can realize where I stand and where he stands. So helpful.

As far as the guilt issue, what you said is so close to me. I do feel guilty, many days, and I feel like I could have done better in every situation that goes wrong. But it is nice to know that I shouldn't let myself carry that. I carry enough already, and don't need to add that to it. I am a Christian, and I believe God will give me the grace each day to work through this. But I am also a human, and I know I will make mistakes and I will feel emotions. So I pray and I go on to the next day!

Thanks again so much.

Laura

 
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Old 10-18-2012, 08:38 AM   #10
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Re: Dementia and the Caretaker

Deb: I just read this recent post to my youngest daughter, who is home with me the most. She's 16. And she was listening intently and very thankful to have these explanations of the things she sees every day. Thank you for being willing to lay out things that give us ways to cope and react properly. That was so helpful. And good to both be talking about it out loud while Dad was gone for a few minutes.

Laura

 
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