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Old 02-29-2012, 01:03 PM   #1
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LOTS of questions... please help

I'm new here on the board but am so thankful that I found it! Let me give you a very condensed version of our story.

My husband's grandfather has never been officially diagnosed with Alzheimer's or Dementia, no thanks to his Doctor (a post in and of itself!). But as a family we see the clear signs that something is up and have watched the decline and signs of ALZ or Dementia increase over the last few years.

There have been a few tramatic events in his life in the last three years, losing his daughter (my MIL) and his wife within nine months of each other. To this day he still insists that they are alive. One day they are vacationing in Hawaii and another day they are lost on the Ranch where he spent his childhood. We've tried telling him they are dead and we have tried just listening while he talks about them. It seems to do no good either way. If we try to correct him it strikes up an argument. If we don't correct him it leads to problems because he insists he needs his car back because "Grandma will be back and she wants it." How do you approach such a situation?

He has one living daughter who lives three hours away as does the rest of our extended family My husband and I are the closest to him, 15 minutes. It came to the point where our family hired on a live in care taker. She is AMAZING! We feel so blessed that she would take on the task and the way she embraced her responsibilities, having never done anything like this before. She has been living with him for almost 18 months and has been a complete God send, relieving the pressure from myself and my husband.

When she first arrived he was good to her and kind but as the months passed he became borderline abusive. He yells, cusses her out, threatens her with calling the police, tells her to go back to where she came from and so on and so on. Today they came to my house and she completely unraveled. She cried as she told me she could not take the verbal abuse any more. It breaks my heart because I know who he used to be, a kind and gentle person who would NEVER have behaved like this before the disease. I finally asked her what she wanted to do and she told me that she owed some one some money and once it was paid back she was going to leave. And to be honest although it was hard to hear I just can't blame her.

These episodes have escalated and become more and more frequent but it seems like our Aunt isn't really dealing with it. It's really frustrating but to ice the cake she really isn't dealing with anything now. Her husband's family recently had a horrible tragedy occur which attracted state wide news coverage. It is something that will take some time to deal with and overcome so the caretaker doesn't want to add salt to an open wound. My feelings are, although it's kind and sweet that she is trying to give his daughter some space, this needs to be dealt with. But it's not my place to decide that.

Next up, his diet. It has gotten to the point where he outright refuses to eat at home. So his caretaker is forced to take him to a restaurant for breakfast, lunch and dinner. He still carries a credit card (insanity, I know!) and spends $1300 a month on eating out. His daughter has tried to set some boundaries but he fights the caretaker until she has no choice to give in. Another factor in her decision to leave. He eats the same thing for breakfast each day, lunch and dinner. She told me it's very frustrating to see him order a plate of eggs, toast, sausage and hasbrowns and only eat the eggs, letting everything else go to waste. He'll order a bowl of soup and only eat the broth and do the same for dinner.

What can we do to get him to eat? How can we encourage him to eat at home. To make matters worse he eats at the EXACT SAME restaurant THREE times each day.

I know this is a lengthy post and I commend you if you made it though it! Thanks for reading! But do you have any advice to offer? To anything I've said? How do I help the caretaker? How do we encourage him to eat? How do we encourage him to eat at home? Or at other restaurants at least? Over all it's so sad to watch this happen and quite frankly overwhelming. How do we cope with the future?

 
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Old 02-29-2012, 01:38 PM   #2
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Re: LOTS of question....please help

Rodsgal,
I am sorry your grandpa is sick with dementia.
My FIL has severe stage of Alzheimer's so I probably know what is going on with his mind.
It is still better to get him diagnosed by a neurologist to make sure.

There are 2 issues I see here:

First of all, the deaths. I am so sorry you lost your MIL as well. It is heartbreaking that your grandpa lost his wife. It is traumatic. Most people have a hard time to deal with it, not to mention he may have AD (Alzheimer's disease.) My FIL sometimes didn't know that his late wife died. At times we told him and he felt sad. Now he does not ask about it. As he gets sicker, we don't tell him the details anymore. You need to distract him. Instead of insisting on the truths, tell him they are somewhere else. They are not here. Some white lies. Or ask him if he needs anything. Change the topic gently. He forgot they died, or he denies that they died. Does not matter. Try to soothe him and take him out for a walk or watch some good tv program or listen to music. Sometimes you can tell him but if he does not believe it, don't dwell on it. Let it be. He may forget about this issue later on. You can say the car is broke and that you will get a new car later. He may forget about it later.

Second, the diet. Amazing! I didn't know he could go to the restaurant and order the same food! It depends on the person. Everyone is different. However, I want to say why he only orders broth. People with moderate/severe stage of AD have trouble eating. They will get choked by water or any hard food. They would get aspirational pneumonia if they are choked too much. If you observe him, he may get choked at eating or drinking water. They have trouble swallowing. My FIL is now on pureed food which is easier for him to swallow. He still eats regular soft desserts.
But Grandpa cannot eat in the restaurant all the time. Also, he likes eggs because they are soft and easy to eat. Finger food is good. He may not need pureed food but he needs some adjustment on the diet. He may have trouble using the fork and etc.

You know, I think a nursing home for memory impaired can offer good food and peers. My FIL just moved to a NH for memory impaired and he loves the food and attention there. You may need to consider a NH for him. He needs a memory unit.

The abuse is natural. One thing for sure is, no one can argue with the patient. It is difficult. He needs 24/7 attention by a certified nursing aid who understands dementia. There are many ways to cope with dementia. Sundowning, for example. Turn on the light at sunset and etc.
Once the caretaker leaves, you will have to get someone. Why not consider a nursing home since no one is able to really pay attention to him?

I am sorry you have to go through this. If he has money, you can also get a home care agency to send the nursing aid or caregiver to come to his house and make sure he is OK. Someone has to take away his credit card. I think the best way is to have him eat at the NH. Of course, if a caregiver can cook very well for him at home, he may like to eat at home.
You need to find out what the issues are first and then decide what to do.
Get a diagnosis if you can.

Take care,
Nina

Last edited by ninamarc; 03-01-2012 at 06:29 AM.

 
Old 02-29-2012, 03:17 PM   #3
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Re: LOTS of question....please help

First, he needs to be properly diagnosed and then he needs to be evaluated for medication to control his outburst. At this point he is too much for one person to deal with, The lady that is with him is definitely an angel!

Mom was much like your grandfather but we did have a diagnosis of Moderate to Sever Dementia consistent with Alzheimer's. We brought in a care giver that was amazing. At first Mom was ok but ask time passed (18 months) she became more agitated and aggressive. It finally ended when she started hitting the caregiver. That lead to placement in Assisted Living. But the behavior issues were not addressed so 18 months later they (Dad has Vascular Dementia) were ask to leave. It started ok and just accelerated. That is when they ended up in a locked Alzheimer's unit. Mom spent 10 days in a Geriatric Behavioral Med Unit having her behavioral issues evaluated and medication adjusted. That was 3 years ago next month (how time flies!). After 3 years of angst and chaos, we have had 3 years of what I call "Chemical Contentment". Yes, we tried everything possible first but in some cases medication is the ONLY answer.

No, you are not going to convince grandfather that his wife or daughter is dead. They believe what they believe and no amount of talking will convince them differently. To suggest different, as you have found out, only leads to an argument. When you argue with a dementia patient... they WILL win! Sometimes they do insist on doing something and all you can do is divert their attention. You can validate their emotions and promise whatever you want in the future They have no concept of time so you just keep promising for the future and letting them know you understand their frustration. My Dad wanted his van... for 2.5 years! It was being repaired, inspected, detailed, repaired, cleaned... and would be back on Saturday, next week, in a few days.... You get the idea! We always started by saying, "I know you are upset it is taking so long but....". That let him know we were aware of his distress and then giving him some hope for the future. They are in the moment so that is what they need..... not the car!

The care giver should not be exposed to the abuse. Yes, it can escalate and put her in danger. Grandfather doesn't mean it but in the moment he is incapable of controlling his anger and aggression. It can quickly escalate to a very dangerous situation.

As for eating at the same place each meal and ordering the same thing. This is what he knows. Those with dementia are prone to repetition. Familiarity is comfortable. You can talk to Grandfather until you are blue and he is not going to understand. Even if he gets it in the moment he will go right back to his familiar pattern by the next meal. Sometimes it's just easier (especially with those who are aggressive or combative) to just let then do what they want as long as it is not life threatening or dangerous. My Mom spent most of a year and a half sitting the flower beds picking out leaves, fluffing the straw, and putting in new straw one handful at a time. She had about 400 ft of flower beds and some were as much as 6 foot wide. It didn't matter if it was over 100 or cold outside. There she sat. If she was not in the flower beds she was washing the 22 windows in her house... over and over and over again. Sometimes twice a week. This type of repetitive and compulsive behavior is common.

So yep, I have been through much the same and can tell you from experience that he does not need to be in the house with one care giver in the emotional state that he is in. He needs a diagnosis and evaluation for behavioral issues. Then, if he can be home with out the angst and aggression, perhaps he can go back home.... but more than likely he is going to need a good memory care placement.

I truly hate that you and your husband are having to deal with this. The Aunt is probably hanging on to her denial because she doesn't want to have to deal with the problem. Hopefully she will come to understanding. I feel for your Grandfather because he is miserable. That is why he is abusive. So please see what you can do to get him a diagnosis and appropriate evaluation for his behavior.

I hate you needed to find us but glad you did! I hope you keep typing It's always nice to know that you are not alone in these difficult situations!

Love, deb

 
Old 02-29-2012, 03:58 PM   #4
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Re: LOTS of question....please help

Rodsgal, you have fallen into a great place. Deb and Nina are wonderful and there are many others here that will help you, listen to you, and guide you if asked. Deb and Nina are two people that I have come to depend on. I hope they don't feel that is unfair. I don't always do what they say but I listen intently. They have so much experience and their hearts are big enough and open enough to share the experiences. Keep talking. I have never felt judged here. You are not alone. Praying for you all.
Lee
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Old 02-29-2012, 05:06 PM   #5
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Re: LOTS of question....please help

Lee, I hope you don't do everything that I say I just hope my experiences will help somebody else. You are right, I just throw out my thoughts and experiences in hopes that they will lead to thoughtful consideration of the possibilities. Each of us needs all the information we can glean and then we have to make our own decisions as to what is right for us and our loved ones. There is no right or wrong in this disease and each case is different from, yet similar to, all the rest. So take what works for you and leave the rest It's all good in this on the job training...

Love, deb

PS... pick my brain all you want

Last edited by Gabriel; 02-29-2012 at 05:07 PM.

 
Old 02-29-2012, 05:44 PM   #6
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Re: LOTS of questions... please help

Deb, you guys have truly helped me in ways I can never repay you for. I learn so much just reading various posts. It makes me ask different questions or sometimes the same question differently. Either way, it really helps. xoxo
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Old 03-01-2012, 06:27 AM   #7
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Re: LOTS of question....please help

Lee, Like I mentioned in the other thread, I like to share with people so we can learn from one another. Some people don't like to share due to privacy and it is fine with me. I also feel like a relief after I share. I found there are many people like me. Many people have seen this monster dementia. The hardest part is it takes so long. The beginning was also awful but a learning experience.

Nina

 
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Old 03-01-2012, 07:06 AM   #8
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Re: LOTS of questions... please help

Rodsgal,

You mentioned that your husband's grandpa has a hard time to get diagnosed. Usually a GP will not be able to do that although they may think they know about dementia. Ask the GP to refer to a specialist like a neurologist or psychiatrist. Refer him to a behavior center for memory test. There are office tests such as MMSE and 3 hours verbal test. They asked my FIL to draw a clock and he failed it. The stage was not right but he got diagnosed as Alzheimer's. My FIL lied to the tester saying that he took a shower at night and etc. The person with dementia is afraid of water and will not take a shower as he forgets the steps too.

There are also tools like pet scan or ct scan for vascular dementia. This part is done by the neurologist or the stroke experts.

Good luck,
Nina

Last edited by ninamarc; 03-01-2012 at 07:11 AM.

 
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