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Old 08-20-2009, 08:31 PM   #1
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Hello! I'm new..forced my parents to an AL..burdened by guilt.

Hello...
I'm so happy to have found this health board. I have been reading through posts..

Deb, your story is also so inspirational..I know this is a tough month for you, but I want to say that I have learned a lot just by reading your other posts. Thoughts are with you...

So, here's my immediate problem/guilt..Long story short: I have a Dad who is 81, has a dementia that is partly due to head injury, partly due to Normal Pressure Hydrocephalus...partly due to Alzheimers, perhaps. We were so focused on my Dad we didn't even notice how my mother, 10 years younger..she's 71..was little by little leaving us...the typical Alzheimers progression.

Where we are today: My mother began raging at me--I live in NJ--so my brother who lives in DC convinced my parents to "visit" him....while there, he convinced them to try respite trial at an assistedliving in Bethesda..and while they were there we sold the house..and basically forced them to stay. (I'm leaving out all the details).

My gut is wrenched. My parents call me 20 times a day yelling at me. They have torn up all photos of me. But our geriatric care manager tells us we are doing the right thing. That we need to stay tough. Part of me wishes I had "worked harder" to find MaryPoppins/Maria von Trapp/English Butler type of person to stay with them in their home...

Has anyone else had to force their parents to go to AL?

...sorry I'm blabbering...I'll get more focused in the future!

thank you for listening,
katy

 
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Old 08-20-2009, 09:15 PM   #2
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Re: Hello! I'm new..forced my parents to an AL..burdened by guilt.

Katy, I was exactly where you are now just two short years ago...... and I am here to tell you that you have absolutely NO reason to feel guilty because you have done exactly the right thing. Even in the earlier stages of Alzheimer's, your Mom has no clue there is anything wrong with her. It is the rest of the world that has gone crazy around her and she is the only one that is OK

My Dad has had vascular dementia for about 10 years. Mom was his primary caregiver. Then about 5 years ago she started complaining.... hummmm... that was just not typical for Mom. She told us that her doctor said she was depressed. That makes sense. She had been caring for Dad, who is truly easy to care for, for 5 years. Before that she had cared for her Mom who died of Alzheimer's. That's enough reason to be depressed when you want to be traveling and enjoying your retirement. So we let that one go right over our heard. Three years ago it became obvious and Mom was diagnosed with ALZ. It was so easy to blame it on caregiver depression and the rest was blamed on Dad. He didn't remember if he did it and if Mom said he did, how could anybody dispute that?

We actually tried, and we did find Mary Poppins/Marian Van Trapp/ English Butter type person. The caregiver we hired already had wings!!! She was experience, patient, willing to do anything we needed her to do. She would bring their paper, do their grocery shopping, clean and cook, take them to the doctor, give them their meds.... she just didn't wash windows . Mom HATED having her in the house. Mom made life miserable for everybody. The phone rang constantly with Mom complaining. If we didn't get rid of that blah blah blah lady. Our angel hung in there until the day Mom started hitting her because there was no way she could defend herself except to leave. After the caregiver left my Mom went outside, laid down in the yard screaming hysterically that she wanted to die and refused to stop. Here I am talking to Dad who is the only one there I called Mom's best friend who fed Mom chocolates laced with Xanax and called her sister who took Mom and Dad to her house.

The next day, after a quick trip through the doctor's office, Mom and Dad were off with my sister. Little did they know that they would be moving into AL just a few days later. Talk about the fuss they raised. Mom stayed in an uproar and she could whip Dad into a frenzy anytime she wanted. I have two messages on my answering machine that I have saved. One disowns me and kicks me out of the will and the other... she is just going to kick my butt into tomorrow. They have been there for two years and there is a reason I saved them. They are to prevent guilt!! The first time I heard them they were horrible to listen to and I questioned what we had done. Yep, the guilt bug chewed into my heart and soul.

Fast forward two years. Mom and Dad are now in a locked Alz unit. Dad is not that much worse. His Vascular Dementia has taken a step down but he's rather stable. Mom on the other hand is on a steep slipper rapid slide downward. It became obvious that she could not maintain in AL. She was running out the front door barefooted looking for the van that was not there so she could go back "HOME". She terrorized the staff with her antics. The dryer didn't work so she threw the wet laundry at the receptionist. She opened the door and it was not going round and roung!! She threw the remote at the nurse because she couldn't get a dial tone and the phone at the aid because it would not change the tv channel. She was furious at the rec director because the CD wouldn't play on the record player.

So I moved them here to a locked facility. She thought it was a respite before she went "HOME". When she realized it was forever she flipped out and ended up in a Senior Behavioral Med Unit for 10 days. Her Alzheimer's had gone straight to her personality/self control centers. At this point she can not make a complete sentence. She has lost her words and uses the wrong word most of the time. She still wants to go "HOME" but is medication to the point that hysteria and aggression is not possible. Sunday, she didn't know who I was for the first time. She just wanders off, going "HOME", walks around the circular walk in the courtyard and comes back. A few minutes later she does it again.

I learned something important. We can't feel guilty when we do the right thing even if it is not what our parents want us to do. We have been so conditioned to "mind" our parents and "respect" their wishes that it is ingrained. But in this situation we can't "mind" our parents wishes out of "respect" for them. We can't leave them in the home they love for their own safety and well being any more than they could have left us there alone when we were toddlers. You don't feel guilty taking your little one to a day care So guilt is not allowed!! You have done what is right and good. You have nothing to feel badly about. Actually you should be proud of yourself for having the heart and soul and strength and courage to do what needed to be done in the face of their anger.

Just know you are not alone. My pictures have been torn up, I have been chewed up and spit out on the phone and in person, I have been kicked out of the will and disowned, I have been threatened with every possible ill, and I have even had the cops called on me for stealing their van. (For real she called 911)..... and somehow I have survived. I have even relocated my sense of humor along with the knowledge that I did what was good and right.

Yes, you will figure it all out and get more focused in the future. You will learn to just nod like a bobble head and smile as they rant and rave. Then you will get in touch with their doctor and request medication to take the edge off of their anger and frustration.

I was not a proponent of psychotropic medication to start with but I am now. I realized that they are truly in emotional pain. Beyond that they truly don't have the ability to express that anger and frustration in appropriate ways. As Mom's geriatric psychiatrist explained it to me... I would never refuse Mom medication for physical pain. I would never make her suffer that pain if I knew there was some medication that would take it away. So why was I not willing to do the same for her emotional pain? Good question!! He stopped me in my tracts and made me think.

Mom and Dad are both on a psychiatric cocktail of medication. They are not in a drooling stupor but the edge has been taken off the pain they are in and they are doing better now. Cognitively, they are worse, but emotionally they are much better I haven't had to duck lately!!!

I hate you needed to be here Katy but I am so glad you found us. This is a great group and we have all been where you are. Just know that you have done exactly what you should have done and there is no room for guilt because you have so much more to deal with....

So welcome to the board and I hope to hear a lot more from you. Know I will keep you and your parents in my thoughts and prayers.

Love, deb

PS... here's your first towel. You are going to need it. You can wring it in frustration, tie up your guilt in it, wipe your wet eyes and even blow your nose in it. Or you could use it to pop those that annoy your. It's the most valuable thing you can have on Planet Alzheimer's because that's where your parents are. They are no longer of our world but in a world of their own. But most importantly.... we have the other end of that towel so hold on

 
Old 08-21-2009, 08:02 AM   #3
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Re: Hello! I'm new..forced my parents to an AL..burdened by guilt.

ktfair,

Welcome to our family! We are a bunch of folks, going through what you are going through, in varying stages of this dreaded disease. There is a lot of wisdome here, and so much experience that it boggles the mind.

I learned so much from these incredible people! Even though my daddy is now gone, they were with me step by step as he progressed. And even though all of our stories will end the same way, our loved ones take their own jagged journey though Planet Alzheimers.

Here is something I learned that saved my sanity quite literally: If you had a 3 yr old child, and she wanted DESPERATELY to drink just a little glass of gasoline, would you let her? Of course not. If the same child REALLY wanted to play Barbies in the center of the road, would you let her? Of course not.

Now, what if that child threw a screaming "I HATE YOU" tantrum? Throwing things, threatening, crying...would that affect your decision? Of course not.

It's no different when the roles change and you become the parent of your folks. They LOOK like your folks. They SOUND like your folks. But the "imposter" has taken hold, and this disease makes them say and do things that they would never do normally. That was such a hard concept for me...but it's true. Now, you have to parent them. And tell them "no". And watch 'em have a coniption. And love them anyway.

Now that your folks are taking this long trip through this disease, they are or will be more like a reticent child that the mom and dad that raised you. Eventually, they will go from your "folks" to rebellious teenagers (see DGabriel's story), to headstrong toddlers. Then, babies once again where they need to have their diapers changed and food spooned into their mouths. And of course, the end stage where they will eventually pass on like my daddy did just 4 short days ago.

When you look at or talk to your parents, look at them objectively for a minute. You will see that the fits they throw are part of the disease. It's so hard to be cussed at, disowned, hated. We all are either going through it or have gone through it, so we do understand.

I will throw you a towel, as well. This one is pink, because that is a calming color. Wring it hard, and put all your guilt into it. No guilt allowed here - it's a negative emotion that will do you no good. (Heh. Guilt is my middle name, I am afraid, and it's a tough emotion to get rid of. But please try - it's important that you maintain objectivity). Post often, and keep a stiff upper lip.

Again, I welcome you to our little family -

...lil' deb

Last edited by skimps46; 08-21-2009 at 08:07 AM.

 
Old 08-21-2009, 11:47 AM   #4
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Re: Hello! I'm new..forced my parents to an AL..burdened by guilt.

Dear Kate,

You did the right thing. Your parents need more care than they were getting at home. You and your brother did them a huge favor by getting them into a place where they will get the care and supervision that they need. We waited far too long to get my Mom into a NH and it nearly drove me batty.

No guilt allowed. You did the best you could. The best for your parents, proving how much you love them. Their rection is wrong, quite simply, they do not know what they are talking about.

Hang in there. They will settle down. Later they will forget all about giving up their old home. The new place will be 'home'...

Love,

Martha

 
Old 08-21-2009, 02:56 PM   #5
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Re: Hello! I'm new..forced my parents to an AL..burdened by guilt.

Kate, sorry to hear about what you are going through. You are not alone, I think we all might have started out with some guilt.

We agreed to put mom in a NH because she could no longer care for herself. We all tried first keeping mom in our homes because we thought we could give her what she wanted and make her happy. She wasn't, she was miserable. As she was in each of our places, she required around the clock attention. It wasn't good enough if we were in the same room she needed someone to sit with her, and talk to her all the time. This was very difficult to do with a family and other responsibilties? Too, in the beginning, I was feeling so much guilt that it was clouding my judgement. I thought I would have a nervous breakdown, because I felt torn between her and my family. I recall losing it a few times, because mom was behaving so dependant and selfish, so I thought. Little did I know it was as a result of her illness.

I'm sorry that your parents are making you feel bad by their actions and anger. Just remember no matter how hard it is, that you are doing what's best for them. As they continue to get worse, you will see as I did that they are in the best place possible.

hugs

dorri

 
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