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Old 01-01-2010, 08:12 PM   #1
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New caregiver with lotsa questions

I have been reading many of the posts here for the past couple of weeks...searching for answers and hoping to find information related to what we are dealing with, with my FIL. There are so many similarities, and you all seem to be wonderful caring people who are so eager to help complete strangers! Thank you for that!

Ok...to give a little backround info. I have been married to hubby for 20 years. He has 4 brothers and two sisters...all but one have spouses. We have two children who are 20 and 17. MIL and FIL have been married 50 some odd years...MIL hating most of those years with him...for various reasons. They have separate bdrms and have lived that way for many many years. He cant sleep laying flat, she cant see the tv over him...etc, etc.

FIL is 80 and had a brother recently pass away from Alzheimers. Over the past couple years we have noticed that he is becoming more and more paranoid and forgetful. About two years ago they moved into an apartment complex for over 55 people. They lived alone together in one of our properties for 15 years prior, but could not keep up with the upkeep and the neighborhood was getting very bad.

So while they didnt like the apartment it was easier than the house and easier on their finances as well. My FIL started complaining that he thought the lady who lived up stairs was following him while he walked thru his apt. Like she would walk into the same rooms upstairs as he was in downstairs. Then it led to him thinking that she was looking down her bathroom vent into his bathroom while he was in there. All of this was driving MIL crazy and she was getting more and more angry with him...hating living in the apt as well. We took FIL for brain MRI which showed no strokes, etc. And he passed the mini mental exam with no problem.

After 8 months of their apartment living, hubby and I found ourselves(and kids) looking for a new place to live. Hubbys wonderful sister bought a house with an in-law apartment, about a year ago. The answer to everything!! We live upstairs while MIL and FIL live in the lower level. Since I have not been working over the past few years, I have been MIL and FIL's caregiver so to speak. Neither drive, so I take them to appts, shopping, visiting, etc.

So, they love living with us and being out of the apartment and we have had no problems living with them. THey have their own kitchen, bath, and two bdrms. Over the past few weeks my FIL has started having what I think are paranoid delusions. He thinks that I have been hooking my MIL up with men and that I am evicting him to have my father move in with my MIL. I have not had a relationship with my father in years! He tells my BIL that my dad has been here many times...when in fact my dad doesnt even know where I live.
He is accusing her of having men over while he is in his room, and after seeing their annual Soc Sec income statements...thinks that she has thousands stashed in a bank somewhere. They have very little money, never owned property, have no savings. He calls his other son all the time, telling him that he is being evicted, and that I am taking his wife out to meet men.

We took him last week to his dr who did the mini mental exam and he scored 16 out of 30. He was very upset with himself because he knew he couldnt remember the easy questions. Dr spoke with me alone afterwards and said that while he only scored 16, he compensates very well. He went for another MRI which we will get the results of next week.

Now for my questions...How is it that he acts fine when family members come around? MIL keeps saying that he is "faking this whole dementia" thing...since he seems to be normal while sitting at the table having conversations with other people. She has a lot of hatred towards him and has zero compassion, with even less patience. She barely speaks to him and that is adding to his paranoia. He keeps thinking something is going on and she never talks to him. She is so angry at him for thinking that I would be doing anything wrong or behind his back...since I do everything for them...to help them out.

So, she is in denial, my hubby is in denial as well as his brother. They think he is just going thru a phase and that the dr doesnt know how normal FIL can act at times. He plays solitaire all day every day...reads the newspaper from front to back.

Another question,...he remembers his younger days like they were yesterday and that is ALL he talks about...over and over again. Is this a normal sign of ALZ/Dementia?

I have many more questions, but have bored you long enough for now..Im sure! Thank you for allowing me to just get it out...and try and sort thru things with all of you. I dont even know you all...but feel like I know you and your families, after reading so many of your posts!

Christine

 
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Old 01-01-2010, 08:57 PM   #2
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Re: New caregiver with lotsa questions

COLOR="Navy"]Dearest Christine -- pull up a chair
Here are the answers to your questions
[/COLOR]

Now for my questions...
How is it that he acts fine when family members come around? Your FIL seems fine around family members because tht is the result of a combination of "your father living off his long-term memory as well as the family members not wanting to see the things for the way they truly are. My sister made many excuses for my Mom in the things she was failing in. Such as cooking, my sister just felt that my mother was being lazy and didn't want to cook that day. Or when an item was cooked differently (truly because Mom couldn't remember how to cook it) my sister would say that my mother was experimenting.

So, she is in denial, my hubby is in denial as well as his brother. They think he is just going thru a phase and that the dr doesnt know how normal FIL can act at times. He plays solitaire all day every day...reads the newspaper from front to back. He can play solitare because its part of his long term memory. Newspaper? He looks like he's reading it and he may truly be able to read it for a little longer, but in reality, there will be a time when he can't understand the written word. Take a new article, read it, and then say "Dad look at this, have him read it and then try to hold a conversation about it with him. you may be surprised about what he's truly reading.

Another question,...he remembers his younger days like they were yesterday and that is ALL he talks about...over and over again. Is this a normal sign of ALZ/Dementia? In Alzheimer/Dementia, our loved ones always talk of the past. They will deliberately control conversations and steer it to things that they can 'bring up' but it is always in the past or 'old history'. Its because they all lose their short term memory first. Take 12 items and put them on a tray, let them look at it for 1 minute, now cover the tray and ask them to recall the items on the tray

I have many more questions, come back anytime and ask any and all questions. One are stupid. But there's one rule here, and that is YOU CAN NOT FEEL GUILT OVER ANYTHING but have bored you long enough for now..Im sure! Thank you for allowing me to just get it out...and try and sort thru things with all of you. I dont even know you all...but feel like I know you and your families, after reading so many of your posts


CaringSister54

 
Old 01-01-2010, 10:02 PM   #3
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Re: New caregiver with lotsa questions

Welcome Christina. Sorry you needed to find us but glad you did. There are never too many questions and all the background information is needed to explain the situation. It takes a lot of words to paint a picture I do hope you keep typing!

First I want to say that "passing" the mini mental means answering 30 out of 30 questions. Each question si designed to test a specific area of cognition. Mom's doctor said she "passed" with a 26 out of 30. In fact Mom was well into her Alzheimer's. A 16 is a low score.

Your father is probably having paranoid delusions mixed with the confusion. I do believe men have a very different paranoia since they are the "protectors". Dad was obsessed with locking up and people being in the house. Any bump in the night would send him back to check the door locks or search for whoever was in the house. Dad also went through a phase where he thought Mom was having an affair.... and Mom had had her moments thinking Dad was running around on her. (They are both in a locked unit and sleep together!) These are all typical. Dad doesn't remember that Mom went to bed early and wants to know why she is in bed and who she had been with. If Mom is not sleepy Dad wants to know who she is going out with. If Dad is napping then Mom swears he's out with something else. It's all part of the disease because they can't remember or rationalize what is going on around them.

As for Dad fooling those that don't live with him... it happens. Mom pulled the wool over so many eyes for so very long. I would ask her a question and she would seem to give me an answer. If I didn't know better, I would think she was giving me the correct answer. But if you knew what had really happened you knew what she was saying was not so. She would cover up what she didn't remember by making excuses such as "nobody told me that", or "I did know that". A lot of the time she would just smile and nod. Or she would tell a story.. usually with only limited truth to it... but to the outsider it sounded good. I also know that these times wore Mom out!! She would be so exhausted from the effort. I also noticed that eventually she would just say she didn't feel well. That way she was not expected to be jovial and communicative.

The best one Mom pulled was not long before she moved to AL. We were taking turns spending the weekends with her and a caregiver was there during the week. My sister showed up for her weekend and brought 2 of her daughters and 2 of their children. Mom took to the couch swearing she was sick. She stayed on that couch all weekend. I arrived just before my sister left because Mom had a doctor's appointment the next day. As soon as the 5 of them pulled out of the driveway I noticed Mom peeping out of the window. I walked back in the house to Mom saying "Can I get up now?" It turned out that she didn't want to cook for all 7 of them. In reality she couldn't cook any more and my sister and her daughters were there to do just that. When I called and told my sister what had happen she was astonished. She really thought Mom was sick!! So they do what is necessary to cover....

But as for faking it. They are not able to fake it. The confusion is real. They just do what they can, within their confusion, to make their world as normal to them as possible. It's all about them and is not directed to anybody else. As with Mom and the couch... it was all about her.

I do foresee problems with your MIL and FIL. When there is that kind of resentment the situation will only deteriorate. MIL doesn't believe there is a problem with FIL. FIL has no ability to respond appropriately to MIL which makes the situation worse. MIL responds inappropriately because of her feelings and it escalates. I watched this happen with Mom and Dad. Eventually they actually came to physical blows.... and they have a very happy marriage for over 50 years until dementia. When two people, living under the same room, have a distorted reality and don't know how to respond to each other, that is a recipe for disaster.

Mom and Dad could read well into their dementia. They could not recall what they had read but they read. Mom did puzzles as well... incorrectly but she did them. She also played solitary on her hand held game. I don't think she has won a game a 4 years but she was pushing the buttonn again yesterday Dad on the other hand... He can still beat you in checkers..... but he learned to play when he was a very young child.

You will find that their current memories go first. They can not recall what happened 15 minutes ago. The part of the brain that makes new memories is impaired relatively early in the disease. But the memories that were stored in the distant past are still there and they are able to retrieve those memories in the early and mid stages of the disease. Dad couldn't tell you if he ate breakfast let alone what he ate... but he could tell you the names of the crew on the B-17 he flew in the 40's. It is what the disease does.

As for denial... it is how many deal with what they can't deal with. Nobody wants to know that their loved one has a disease that has no cure. Dementia is feared and it's much easier to deny than to admit. I worked in LTC for years, had a grand mother with ALZ, several great aunts and aunts as well, plus my Dad with Vascular Dementia... and I missed Mom's ALZ for way too long. You make excuses, The person with the disease makes excuses, and you all float along with blinders on hoping it will go away. Then somebody sees the light. They see it as crystal clear but the others still have those blinders on.

I found it useful to point out behavior. Look for the symptoms that will help the others understand. Ask Dad to subtract some numbers. Abstract think (numbers are abstract) goes quickly with ALZ. They need to know this and see for themselves. Just the fact that Dad scored a 16 on his mini mental. As Dad to do something that involves several steps or to remember something that happened earlier in the day while the denials are there. Tell them of the bizarre behavior. Then assure them that he is not crazy... he just has a disease and you all need to pull together and be on the same page to help him. While you are doing this give them all the information you can find on dementia. I even took the signs of ALZ and wrote notes as to how Mom fit that symptom and passed them out. But the best thing to do is go to a geriatric neurologist and get a diagnosis. Or go as far as I did and go to a Memory Assessment Service for complete cognitive testing. It surely is hard to argue with a 32 page report the specifically describes the deficiencies in her cognition! A real diagnosis is the first step. If there are naysayers that argue with you... then tell them that it needs to be done, even if it proves you wrong That is how I got Mom diagnosed... because so many thought I was wrong and they wanted me to shuddup!!!

So keep typing your questions And welcome to our little corner of dementialand!

Love, deb

 
Old 01-02-2010, 05:11 AM   #4
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Re: New caregiver with lotsa questions

Christina.

Denial about the situation is very common for everyone. Family and even the person themselves. After a whole week, my mother in law, just didn't think my wife was "that bad".. even after having been diagnosed. Believe me - she was that bad.

And dementia patients have an amazing ability to cover up for someone new. They will use all their energy to seem normal, but it wears them out. And once the new person is gone, they will crash for a while. at least that was my experience.

 
Old 01-02-2010, 07:01 AM   #5
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Re: New caregiver with lotsa questions

Thank you for your replies...I started to get tears in my eyes just feeling that you all do understand. Its so hard when I point out something that FIL does that is completely out of character for him and I hear..."he's always been the jealous type" or "he's just looking for attention...he'll be fine".

I dont think that he has completely lost his short term memory yet. My husband took him out for a while the other afternoon. FIL wanted to get out and get his lotto numbers. They went for a ride through their old neighborhood where hubby grew up. Later that night FIL was telling everyone what he saw in the neighborhood and even what the lotto numbers(three numbers) were for that afternoon. So I know he does retain some short term memories...but on the other hand he more often is asking the same questions over and over. "Is Mike coming over today?" MIL gets so angry that she has to answer the same questions over and over.

MIL's blood pressure is through the roof and she has her own illnesses that are making us concerned. I have tried to explain to her that FIL doesnt understand and gets confused about things. I have told her she needs to try and change the subject when he gets stuck on something "stupid". She has so much built up hatred and resentment that she doesnt want to talk to him at all...let alone try and change the subject. So she snaps at him and gets very frustrated. We are so worried that she is going to have a stroke. My SIL's are on board with what is going on with their dad...even tho I know it is hard for them to accept. We have tried so hard to get MIL to calm down, but it isnt working. She just doesnt want him around and wants NOTHING to do with taking care of him in any way. FIL knows that his memory isnt great, he still talks about how he couldnt answer those mental exam questions. He has even said "just dont put me in a home". He wants to be with MIL but she wont give him the time of day.

Have to go for now....just really wanted to thank you for your insight. I have already learned so much from all of you! Its soooo easy to start rambling when I get on here...I have so much to talk about that those closest to me dont want to hear. Again...thank you!

Christine

 
Old 01-02-2010, 07:59 AM   #6
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Re: New caregiver with lotsa questions

Quote:
Originally Posted by ChrisNY View Post

I dont think that he has completely lost his short term memory yet.
Welcome to our little corner of Healthboards!

One of the things the wonderful ladies (and a few gents) here have helped me understand is that Alzheimer's is a confusing and unpredictable disease. Sometimes it will seem like things are quite normal and you may even question whether it's really Alzheimer's. Other days, you'll be very certain. It's kind of like a light switch. Sometimes the connection is turned on, ie, the circuit is complete, and sometimes it's turned off. What they can remember depends on whether the wiring is letting the transmissions through or not at that particular time.

Some days my MIL know who every one of us is, but most days she thinks my husband is her brother. Some days she knows my name, some days she thinks I'm a neighbor girl and asks where I (the "real" me) am. No amount of talking can convince her that I'm me and not the neighbor! A few hours later, she may be completely lucid again.

Just thought it might help you to have that electrical circuit illustration in the back of your mind as you go through this. It helped me a lot!

Blessings,
Emily

 
Old 01-02-2010, 08:18 AM   #7
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Re: New caregiver with lotsa questions

Quote:
Originally Posted by BlueAtlas View Post
Welcome to our little corner of Healthboards!

One of the things the wonderful ladies (and a few gents) here have helped me understand is that Alzheimer's is a confusing and unpredictable disease. Sometimes it will seem like things are quite normal and you may even question whether it's really Alzheimer's. Other days, you'll be very certain. It's kind of like a light switch. Sometimes the connection is turned on, ie, the circuit is complete, and sometimes it's turned off. What they can remember depends on whether the wiring is letting the transmissions through or not at that particular time.

Some days my MIL know who every one of us is, but most days she thinks my husband is her brother. Some days she knows my name, some days she thinks I'm a neighbor girl and asks where I (the "real" me) am. No amount of talking can convince her that I'm me and not the neighbor! A few hours later, she may be completely lucid again.

Just thought it might help you to have that electrical circuit illustration in the back of your mind as you go through this. It helped me a lot!

Blessings,
Emily
Thank you for that picture..it does help! I have been trying to tell my MIL that very same thing when she says "he was perfectly fine when Mike was visiting earlier". I guess I just needed to hear it from someone else. I feel like I am busy trying to convince others to see what is clear to me. Started making me wonder if I was making more of it than what it really is. Its a tiring process, but I am willing to do what it takes to help everyone get through this. Hubbys family is and always will be precious to me. After my mom passed away 15 years ago...my own family has fallen apart and none of us keep in touch anymore. We were always a disfunctional family, so I treasure the closeness and caring in hubbys very large family.

Christine

 
Old 01-02-2010, 11:00 AM   #8
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Re: New caregiver with lotsa questions

The light switch comparison is something that my family has used for years. First with grandpa then Gram. Last loved one was Mom. After she moved to Assisted Living she amazed us. For days she would be just fine....light switch ON. The the phone calls would start and she wouldn't know where she was and wanted me to come after her. Light switch OFF.

This disease is a roller coaster ride for all of those involved. My sister refused to believe there was anything wrong with Mom at all. She was well into dementia before Sis would even consider the possibility this was happening to our Mom. I suppose the idea was just to awful for her to think about. This of course doesn't make things easier for those of us who are the caregivers. Until Sis had to take care of Mom on her own because I was out of town, did she see and agree that Mom was not herself..............finally.

I'm so sorry you find yourself here. But I welcome you and come back often. Its a "soft place" to land when your full of questions and doubts.

Love, Chris

 
Old 01-02-2010, 11:19 AM   #9
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Re: New caregiver with lotsa questions

Emily is right... it is exactly like a light switch. Sometimes it is on and the memories stick and sometimes it is off and nothing sticks. What happens is at first the light switch is on more than it is off... that the light switch gradually stays off more and there are not as many on times... until it goes off completely.

When I look back, aside from the personality changes, there was an episode of Mom getting lost at the beach. She walked off down the beach and returned to the wrong hotel. She went to the right room and insisted that her family was there, repeatedly, until the individual in the room alerted the police. In the mean time we had alerted the police, they put the two together, and brought her back. She was fine the rest of the week and assured us it was just that the two hotels looked identical. It was almost a year before it happened again but this time she got lost on her way home from the cabin, a trip she had made 100's of times. The next episode was about 6 months later on a trip to Raleigh. It was just days before the final episode with a medication overdose she gave dad. We explained away the early episodes and she covered well for a while... but eventually the episodes because to close together to be explained away. That is when you know... and it is usually past the early stages.

Keep working on informing the family Christine. Some you can bring on board and some will never get it. Some will think they have it when you know they really don't Also know that past resentments do play a big part as with your MIL. She is going to be the one you have problems with.

My MIL was much the same. My FIL broke his neck about 3 years ago. He fell over his walker head first into his dresser trying to pet his cat. Actually it was the same week Mom was diagnosed with ALZ. He was in a halo brace in rehab for a long time. When it was time to release him the MIL truly didn't want him home. She didn't want to "put up with him". So eventually he went to a nursing home, had a series of strokes, and died under the care of hospice this past fall. What I did notice when I saw her last was.... dementia symptoms. So watch for that in MIL as well Those behavioral changes are the first thing you usually notice. My MIL was never a delightful person but her behavior with FIL was even a little bizarre for her. Now she can't find the milk in the fridge and has her bills laid out on the table as she struggles to keep up with paying the basics. One peep in the check book register was very telling.... along with the fact that it was obvious that her cook top had not been used in ages.

Chris is right... sometimes you have to step back and let the naysayers take an active roll in order for them to see. Perhaps you need a weekend away

Love, deb

 
Old 01-02-2010, 06:03 PM   #10
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Re: New caregiver with lotsa questions

I am also a newbie but you did the right thing by coming here. There are so many kind hearted people with incredible words of wisdom. Like you, the people in my life were kind enough to listen to me talk about my MIL, but because they had not been through it, they really could not understand what we were going through. Everyone here, however, does understand and care.

I have questioned the mini-mental test several times. My MIL got 28/30 the first time and then one year later she got 29/30, even though her symptoms were worse than the previous year. We decided to change doctor. One thing that we discovered is that there are two different types of mini-mental test. There is the regular one that most people get and there is one that they give to people who have a higher education. When I told her doctor that she was quite intelligent, he said he was glad that I told him and he immediately gave her the regular test but included other questions as well. What I also did was I wrote down a long list of all of the changes that I had noticed in my MIL, including examples, and I gave it to her doctor. He said that it was a very good piece of information for him. By seeing what I had written down, he was able to give a better diagnosis. Every time we visit the doctor, I bring him my list with the new changes.

For the denial, it is so much easier to deny that there is a problem than to face it. ALZ is very scary and because most people don't know anything about it, there is the fear of the unknown. When the first small symptoms showed up with my MIL, we blamed it on her getting older and a little forgetful - it was normal. Eventually, however, we had to face the truth.
If you only see the ALZ patient in small spurts, it is much harder to see that there is a problem because at the beginning, they can have several hours of normalcy. If your family happens to visit during one of these "normal" times, they will have a harder time believing that they have ALZ. When we used to visit his mom when she still lived on her own, we saw a few things that made us wonder, but nothing alarming. When she moved in with us, however, we immediately saw that it was more serious than we thought. Unless you spend a lot of time with them at the beginning stages, it is harder to notice the symptoms.

Just because your FIL reads the paper end-to-end, do not believe that he is understanding what he is reading. My MIL reads her paper every day but has no idea what she read. When she watches TV and I ask her what she's watching, she usullly can't tell me.

PB

 
Old 01-02-2010, 06:28 PM   #11
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Re: New caregiver with lotsa questions

Deb, you are soooo right about needing a weekend away! Unfortunately I dont usually get away until summer time. My sister in law and I go to Vegas for a week! I think we are both really gonna need it this year!!

PB, that is a great idea - to write down the changes for the doctor. My FIL is a very proud man and it was so hard for me and SIL to tell the doctor the "strange" things he was doing - right in front of him. We had informed the doctor before hand over the phone, but he still asked us while talking with my FIL. Of course my FIL denied every thing we told the Dr..lol But anyhow it will be good to keep a list of changes for the dr and other family members as well.

I am learning so many things from all of you here. I have noticed today that my MIL is calming down and being less combative with FIL. I honestly dont believe she is doing it for his sake, but for her own...to try and keep her blood pressure down before she goes to her dr on Monday. Either way, I will take it...makes things easier all around. Sadly, they have not had a good relationship for the past 40 years. He did things in the past that she never forgave...and dwells on them now. She knows she should have left him then, but felt she had nowhere to go with 7 kids and never had a job. So there is lots of bitternesss and resentment. She kind of smiles when she thinks that he may have to go into a home...hard to see, but its her truth.

Have a great night all!
xoxox~Christine

 
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