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Old 08-10-2008, 09:39 PM   #1
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Unhappy New to site--Desperate for advice!

My grandmother who has alzheimer's lives next door to me. Recently my grandfather died which seemed to really set her back. My aunt, uncle and there 2 children have moved in with her to take care of her. I try to help out in any way I can. The problem we are having is with her wanting to go home. She does not realize that her home is hers and she is constantly worried about going home (where she grew up as a child) to see her mom. She gets really mad at us because she has to stay. She is treating my aunt and cousins (8 and 12) like she is mad at them a lot, acting as if she is being held prisoner or she is going to get in trouble because she is not going home. We are trying not to argue with her when possible and we will even call the other and let on as if we are calling whoever she is worried about and letting them know she is staying there. This seems to calm her down very briefly. Everyday we are getting aggrivated and feeling very hopeless. What do you do? How do you handle things like this. We are reading everything we can and trying to stay calm but it is very hard.

 
Old 08-11-2008, 02:25 AM   #2
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Re: New to site--Desperate for advice!

Hi Jackiesgirl.

In a nutshell, you need to get some things in place and fast.

She NEEDS to see the doctor and get some med's to *calm her down*, she is at the agitated phase, and this phase wears everybody else down 'cept the one doin' it. Constantly trying to counter-act behaviours, anticipate reactions .... it's exhausting.

Here... Have a hand-towel, hang on honey, cause your in for a bumpy ride.

Your next lesson is: The DISEASE is speaking, NOT your grandmother. If your grandmother could step outside herself and she what she's doing, she would be horrified. She is NOT in control, the DISEASE is. Whatever she does is NOT PERSONAL. The DISEASE wants control and will do what it can to stay in charge.

She is angry because she has too many choices. This encompasses EVERYTHING YOU CAN THINK OF. From dressing, showering, eating, to living, memories and reality. It's all too much, and she's Pi55ed off because nothing is as HER reality thinks it should be.

She cannot, and is fully unable to step out of her world. Her reality is real, just as ours is to us. Somehow, you have to go into hers, and that's the tricky part. Finding the door and coping with the upside down, inside out, back the front world they live in.

They truly, truly, truly believe that they are perfectly fine. They truly, truly, truly believe that it's the rest of the world that's gone insane, and it makes them frightened. Frightened to the point of they feel backed into a corner, and that leads them to coming out fighting. It's nasty. It's not fair and it sucks.

Does she have a Health directive? Can you get her placed so she is SAFE?

Trauma (death of a loved one, surgery, changes in routine) make them deteriorate much much faster than if everything *stays the same*. Any changes throws them, and puts them back in that corner, where they will (and they do) come out fighting.

The phase will pass. She will become complacent once more, but when? Well, how long is a piece of string. Each one is unique in their *step downs*, yet the *story* is relatively similiar.

I wish you luck, and encourage you to visit Dementia specific residential facilities, get an Elder Care Lawyer, and above all, get her SAFE. Yes, it will hurt, and yes, you may have to give tough love, but ultimately, we want our loved ones SAFE.
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Old 08-11-2008, 03:45 AM   #3
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Re: New to site--Desperate for advice!

I agree with everything Gemini said, but want to add one more thing. A dementia patient is not safe around children. She may take out her irrational anger on her grandchildren, yell at them, make them feel bad, or worse.

It seems like she is not even happy being in her own home -- so the rational solution is to find a nice nursing home for her where she will have around the clock care. I strongly advise visiting some facilities in your area and putting her name on their waiting lists. Full time care is too hard on the person who has taken it on. I did it for 5 years and it was really awful. Finally my Mom went to a good nursing home and was happy there.

Good luck!

Love,

Martha

 
Old 08-11-2008, 06:11 AM   #4
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Re: New to site--Desperate for advice!

I agree with everything Gemini and Martha have said. I have experienced this with both of my parents. There is nothing you can do to make them remember. They are in their reality and it sounds like you are doing all that is possible with the exception of anti anxiety, anti psychotic, and anti depression medication. It is not only for those that are caring for your grandmother but mostly for your grandmother. Imagine the aggitation she must feel. I would strongly suggest that someone talk to her doctor about her behavior and see what can be done.

We tried despirately to keep Mom and Dad at home. They both have dementia. Dad didn't know where he was when he was home. He has calmed down significantly since going to AL. Mom on the other hand has not calmed down but at least she is where there is constant and consistent help when she does get aggitated. They have been in AL almost a year and after the intial phase of adjustment for all of us..... parents and daughters... it has been a godsend.

Medication and nursing homes or assisted living are both for the confort and safety of your grandmother. Welcome to the right place. I hope you find the answers you need. I wish you all well and will keep you all in my thoughts and prayers.

Love, deb

 
Old 08-11-2008, 07:34 AM   #5
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Re: New to site--Desperate for advice!

Bless your heart for being there to help! Such a difficult journey this is!

The death of your Grandpa did accelerate this new challenge for all of you...also, I'm sure the huge difference of having extra people in her home has really thrown her for a loop also. That's quite a few new parts of her life she's suddenly dealing with...and the Alzheimer's magnifies each in huge ways.

Gemini...I always appreciate your "exactly-to-the-point" posts! Martha and Deb...the added info always adds life experiences that are also helpful.

Jackiesgirl...My own Mom is beginning her 10th year after Alzheimer's diagnosis. She's been in an AF for 9 years...and it was absolutely the best decision we made for her...........and us.

My MIL passed away just before Christmas...also from Alzheimer's...FIL also afflicted, and resides in a Medical Facility because of other huge problems we all neglected to address. My husband (62), who also is in remission with Leukemia shows early signs I noticed in my Mom. Whew! This all has certainly been life changing...and life challenging for me! I wish I'd found this forum long ago!

Early on in Mom's diagnosis, my 5 siblings did not understand how I could "go to her world"...some even got mad...but it is exactly what you have to do. I know...I know...your Mom taught you not to tell lies...but this is ANOTHER trick you will have to learn! Just tiny lies that will ease Grandma's pain.

I would pick up one recognizable word that Mom would say in her tangled sentence and say it back to her in my sentence. This seemed to bring her comfort that someone knew what she was talking about! I would tell her stories about my childhood...her baking wonderful pies (and pretend I was rolling out the crust as I spoke)...talk about the huge garden we had and us girls sitting with her helping prepare beans or whatever...my hands in the air demonstrating this to her. She always enjoyed hearing about those times.

Rough times?? You bet!! Part of her knew these changes were going on and there was nothing she could do about it. Accepting this horrific disease is very hard for all involved. I'm the only visitor she has now...my siblings have made no attempt for several years...and it IS hard, but I believe it has improved her care...plus, even tho she has not recognized me in more than 5 years...she DOES know there's someone who loves her there.

Each of the 3 close persons with Alzheimer's have progressed differently, but the end result is the same. I am amazed at how naive I was about this disease...and how it has touched so many I know. So much to learn....so much to learn........and you've found a good place to help you. Keep asking questions........Pam

 
Old 08-11-2008, 08:36 AM   #6
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Re: New to site--Desperate for advice!

Your Grandmother was probably this bad for a long time, but you didn't know it because your grandfather covered for her. It's amazing how well married couples could fool the rest of the family with this horrid disease. My dad covered for my Mom for the longest time. We dind't know how bad she relaly was.

You need to find 24/7 care for your grandmother. She needs to have care where she can be watched by professional help that knows the ins and outs of this creature that had taken her body and soul over. She needs trained staff that will watch over her, dispense meds to her, calm her, feed her, bath her, nurse her when she gets ill...all the things that you just can't do.

Please, for not only your family's sake, but your grandmother's sake. We have walked the walk already and know how awful the road ahead of you is. It's rocky and bumpy and the days are long and unforgiving. the bad far outweight the good unfortunately......

Welcome to Planet Alzheimer...here's your towel, hold on tight.....

 
Old 08-11-2008, 01:38 PM   #7
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Re: New to site--Desperate for advice!

Thank you so much for all of your responses, it feels better to talk to someone who actually has a clue of what we are going through. Alot has been said about medication and nursing homes and I want to talk about that. She is on an antidepressant (Peroxetine), a sedative (Zyprexa) and alzheimers medication (Exelon, the only one that did not make her too sick). The nursing home situation is a sticky situation for us because for one my grandfather was insistent that that never happen. So we are trying to pull together as a family to keep it from happening (unfortunately some pull more then others). Also when my grandfather died my dad and uncle added on an addition to the house for my aunt and her family to move in, so if we were to suggest anything like that anytime soon the family would be in very nasty turmoil. Plus I guess since she still knows everyone and would know where she was going it feels wrong. I definitely see it as something that will happen, but I know everyone else does not. In fact my father was in denial that anything was even wrong for a long time. Now he and my uncle hardly come around her because they just can't handle it. This is such a horrible thing. I guess I feel like she always took care of me I am going to try and do the same for her. I can't wait until my aunt is able to sign on to this site. She is desperate for help. She is wanting to find someone, doctor, counselor, etc to talk to. Once again thanks again so much it is nice to talk to someone in a similar situation.

 
Old 08-11-2008, 03:23 PM   #8
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Re: New to site--Desperate for advice!

Make sure your Aunt signs on Jackie. I think all of us have been just where you are and believe me... this group has experience and good advice from those that have been there before you. Reading books written by the "experts" can not compare to a good conversation with somebody that has walked down the same path you are on.

I understand promises that are made when everything is ok. Mom promised Dad that she would not send him to a "home" and she wanted a promise from us that she would never have to go to a "home". Yet when she was in her right mind she bought Long Term Care insurance for herself and told us that it was just in case she every got ALZ, which her mother also had. In her right mind she knew the need, in her demented mind she doesn't understand why she has to go because she truly thinks that she is find and the rest of the world has gone crazy. It's easy to say ok when your parents/spouse are mentally alert. Dementia is what I call a deal breaker. It superceeds all the promises made. Mom had to put her mother in a nursing home, she told us we needed to do the same when the time came, she even bought LTC insurance, but now that it is time she wants that promise to never put her in a home. So you truly have to take that promise for what it is worth.

It is not unusual for people to be in denial of what is going on and even disappear then the reality is too strong for them to deny any longer. Some just can not handle it. I actually feel sorry for them. They miss so much. Not every day is bad. I have enjoyed some good laughs with my parents, especially my Dad. I wait for those little moments when I see him peeping out of the disease. Those are the moments I hang on to when the day is not a good one.

So keep typing Jackie and have your Aunt join us as well. We look forward to meeting her.

Love, deb

 
Old 08-11-2008, 04:01 PM   #9
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Re: New to site--Desperate for advice!

We also (Mom's 3 kids) promised Mom never to send her to 'a home'. But, we found out that the nursing hmes of today were not the horror stories she was remembering from earlier times. In fact, once she landed in the NH where she was for 2.5 years until she died, she always believed it was a ''health spa" and was happy to be there. She enjoyed being with other people. Mom had always been a social butterfly, having company and fun and games.

It didn't take long before she believed her room was where she had always lived, and her new friends were people she grew up with. Always one to make the best of any situation, Mom was once again contented to be where she was. Only towards the end, a few months before she died, she often talked about going home to be with Mama, her mother.... who died in 1956.

I agree that those promises can be translated to mean, "I promise to always have you in the place where you will get the best of care." It may be her own house, it may be a nursing home. The rest of the family will eventually agree. The ones who live in the same house may well be the first to agree!

love,

Martha

 
Old 08-11-2008, 10:48 PM   #10
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Re: New to site--Desperate for advice!

In a normal, rational world, it would be possible to keep promises made before we knew of the horrific events yet to come.

Seriously ... and I mean seriously ... do you really think, for one minute, your grandmother would want to put ALL her family (helping and non-helping) through the HELL that Planet Alzheimers WILL (and is) putting you through?

It's GOING to get worse. She will, more than likely, become incontinent of urine. You have to not only skirt around a cranky dementia lady, but also find soiled underwear, smelly clothes and the tough one ... getting her to shower or at the very least, a quick wash. She will, soon after, become incontinent of faeces and that's REALLY not pretty because I've seen some pretty gross ways these people try and dispose of their *accidents*. The disease makes them VERY cunning and crafty, and will change just as you think you've got a handle on things.

The medications she is on: how long as she been on them? Most medications need to be altered/changed entirely every 3 - 5 -10 years. She may need an increased dose, she may need a complete change. Alz. medications only slow down the disease, up to a point, and then no Alz. medications will help.

God, it's such a hard journey, and I am SO relieved to be OUT of it. Yes, I am straight to the point, because you can't sugar-coat this.

This disease DESTROYS families, take it from one who has had her family ripped apart by what this disease projected. My son is now schizphrenic from the trauma and stress as well as bi-polar, and it has been tracked to his experience of dealing with his beloved grandmamma and watching her turn from a caring, warm, beautiful women to a biting, hissing scratching screaming angry incontinent wanderer (25km walk to the nearest highway when the police found her!!).

DO NOT LET IT DESTROY YOUR FAMILY because it will do it's best. This disease takes no prisoners!!

Sorry for my bluntness.

You need to:
  • Get an elder care lawyer - to get finances and legal things straight.
  • Call a family meeting and discuss pro's and con's. Nursing home may not be the answer *yet* but don't discount it, because somebody's going to do the hard yakka and will burn out. It's exhausting being on call 24/7.
  • Prepare!! Learn!! Educate yourselves!!
  • Find your local Alzheimers Chapter, there are chapters all over the world and we have the glory of the internet!

tough love hurts. But don't try and gloss this over and don't assume everything will go according to plan. People make promises. People break promises. If you have enough $ you can keep her at home with round the clock care, secure environment (escape-proof) ... the list is endless.
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Old 08-12-2008, 04:08 AM   #11
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Re: New to site--Desperate for advice!

You tell it like it is, sister. Everyone needs the truth. I was held back from doing what was best for my Mom by some family members who pooh poohed all my concerns, repeatedly telling me Mom was fine, I should let her walk around the city (NYC) by herself, her memory was 'not that bad', she was just getting old (there are 100 year olds who are in their right minds!)

Get help early. Get the right help. Moving her around is bad for her, so get a permanent place and have her stay there. Do not rely on prescription drugs - the one that really helps is 5 years down the pipeline.. those currenly in use are worthless at their best - at their worst they cause aggression.

This is a time for you to be very strong. Information will make you stronger.

Love,

Martha

 
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