While on spring break, we rode south to visit my parents in Florida. I don't usually talk to much about my mom, but once in a while, I think I need to for therapy.
Last week we got the diagnosis we all have known in the back of our heads, but dreaded to officially hear: advanced stage of Alzheimer's. Seeing it on paper, and hearing it from her doctor...rocked my dads world.
Because my mom has always been fearful of legal dealings, such as POAs, and Medical Surrogates. So, with my sister and I by Dads side we met last week with an attorney. We are petitioning the court for moms guardianship, this way he can legally place her in a home, that will meet her needs and get her the help she consistently denies. She has only gone to the doctor twice in the past year, and we had to lie to get her to those appointments. So, it will be fight, as the mere mention of a doctors appointment or someone coming to the house arouses her aggression.
Something new is her constant sleeping, and in a daze of sorts. Last week she just sat there, disengaged, and staring past us into emptiness.
I never thought I would see my mom like this, I mean what kid would? When we had the boys, she was over the moon about them, they were her world, now she had nothing to do with them, and was wanting them to leave.
It hurts like hell and I hate how this horrible disease robs the patient of their life. All we do is pray for mom that God will intervene and relieve her of this mental torment and call her home.
( is that bad to ask for? )
JUGM
ph Swwet Angel - no, it is not bad to ask for. her quality of life is becoming next to nothing and it is natural, as her daughter, to want this to go away. your mom's diagnosis means she will never be the same again and she is only going to get worse. i pray that she passes on to the Lord before becoming catatonic and completely unresponsive. when a person enters that stage it is very difficult for their loved ones to see.
ReplyDeletethis is all going to be so hard on your family, especially your father, and i really feel for all of you.
i am sending so much love to you and Senior, to the boys, to your dad, and to your mom. love you Gurlie.
your friend,
kymber
Thank You My Friend...its hard praying for that. But, I konw my mom and I hope she can get the peace in heaven that she felt she never had down here. She has had a bit of a sad life. I can't help but feel guilty though...this is my mom. The woman who band aided my boo boos when I feel off a bike, who bought me a special little doll when I was 8 because she saw it in a gift shop and thought it needed a mommy. I watched her sacrifice her needs and wants for years to provide for us kids. My Mom dressed herself immaculately, beauty parlor trips to get the hair done, perfume and makeup... Now, she is just a shell of that woman.... its just heartbreaking to witness...
Deleteoh my Gurlie - it is going to be very hard for you. but just remember her when she was at her absolute and fantastic and well-done up best...that's what she wants for you. she does not want you to go through seeing her like this...but as a good and loving daughter...you must see her through to the end. THAT is what she needs from you right now.
Deletei send YOU healing strength as i can't be there with you to help you through it. but you know that there are 2 angels that make a pack of 3 when you are involved and we 3 - we can help each other get through anything.
i send you soooo much love and wish that you didn't have to go through this. you know my deets. and i am always available to talk.
sending so much love. your friend always,
kymber
Our soul needs our brain to dwell and operate in this world. I think that as the strings that bind the soul to the brain are cut by this horrible disease, bits of our soul are already in the process of moving on to the other side. We are a stream of consciousness that interfaces with this reality via the brain, NOT just a hard drive and a processor stuck on top of 2 shoulders with a one time download, but a continuous stream. When the bio-parts no longer work correctly, I think the soul (this stream of consciousness) begins to cry out for relief.
ReplyDeleteThere's no shame in wanting relief for your mother. After all, you are merely vocalizing the very thing she no longer can. The fact that she will fight her being placed in a home is only a symptom of the disease.
For example, several years ago, I was privileged to meet a very elderly couple and have dinner with them after church one Sunday. He was a WW2 vet and his wife was a total pleasure to talk to at the table and was a perfect lady. 2 months later, she was in a home heavily medicated because she could become violent a the drop of a hat. She had the same disease as your mom. It's the disease "talking", not your mom, if she fights you guys tooth and nail.
No, it is not bad to ask for this.
I'd like to stress that your mom may not necessarily become violent just because the lady in my story did. She was originally non-violent then became that way. Try not to anticipate this too much and worry yourself over things you can't control.
DeleteThank You Matt... I do believe what you said about the soul starting to leave the body, mom is willing herself to die. I know it won't be from the disease though, it will ultimately be by another cause, in her case she is starving herself, and has had a series of mini strokes..its a matter of time before that big one hits.
DeleteMom has been violent with my dad, he has told us several times she has hit him, which is another reason for the guardianship...to get her in a place to safe guard her and those around her.
+1,000 to Matt...who always pops up when needed and explains things so well. Gurlie - like Matt said, your mother is passing. right now she is half-way in this world and half-way in the next world. and of course she wants to go full-way into the next world but her body is keeping her here. i am glad that she will be in a place that she can be properly safe-guarded. and that, honey, is the best that you all can do until her body decides it's time to go. when she does go - well we all know the wonderful place that she will go to. and we all know that we will meet her once again...of, for some of us, meet her for the first time!
Deletei am sending you so much love. you know where i am. your friend, always,
kymber
Its going to be a long battle getting her in to a place she needs to be. Mom is extremely aggressive and refuses doctors, and any outside help. She is paranoid of the world. It makes me so sad, because we are here to help and she doesn't see it that way.
DeleteI know once that day happens mom will be a beautiful angel in heaven singing in Gods choir..but I can't help being selfish, i want her here, being the doting grandmother etc.....
I've taken care of lots of Alzheimer's patients, both in a special Alzheimer's unit as well as part of my job as a Home Care nurse.
ReplyDeleteYou are not a bad person for wanting someone you love not to be in pain, either physically or mentally, any longer. This includes not only your mom, but also your dad, your sister and even your kids. After all, it can be confusing when Grandma goes from doting on you to screaming at you when you're young.
Get on-line and look up the Alzheimer's organization (alz.org) in your local area for support for both you and for your dad. There are branches all over. There are lots of resources available, good books to help understand how the disease progresses, as well as resources on how to pick an appropriate facility so she gets the care she needs, to volunteers who can come "visit" to provide some respite for your dad so he can go to the store or just out for an hour or so once a week. Individual visitors tend to be better tolerated then groups...even if the groups are family members.
And never, ever, ever feel guilty about your feelings of anger. This disease is horrible! Remember your mom when she was able to be your mom...not as she is now, or has been for the past couple of years...remember the good, let the bad blow away on the wind. And anytime you need to rant...feel free. That is what friends are for...even internet friends.
Will keep you and your family in my prayers,
Suz
Suz,
DeleteThank you so much for all the encouragement and info. My dad and sister are in touch with the ALZ group, where I live there is not a chapter. So i jump online. I do remember the good times, and I know this person she is now, is not who she was. I just pray for Gods mercy and he will call her home soon. I think my guilt also comes from not being there like my dad and sister are. I go down monthly, but its not the same as every day.
I do have a question...since you have worked with Alzheimer patients, how do you get them to allow visitors? My mom refuses visitors. It is going to be tough, because the courts will have to appointment 3 medical professionals to evaluate her at the house. I am afraid it will get very ugly.
It's ok if it gets ugly as that way the medical professionals will get to see what your Dad and sister have been dealing with. If everything is sunshine and roses when they are there, they can't make an accurate assessment. It's hard, and can be embarrassing for the family, but it's ok if she acts out, as they need to see that to get her the appropriate care. It all depends on how the court arranges the appointment...sometimes it is set up for 3 separate visits, and sometimes everyone comes at once. Separate visits can be helpful as that is less disruptive for your mom, and the assessors get to see her on different days to see if she is always like this or if she has good days and bad...different folks have different patterns, just like the rest of us :).
DeleteThe other thing is I wouldn't tell her they are coming. All that does is give her a chance to get torqued up. Sometimes a drop-by visit goes a bit better. Also, she doesn't need to sit in the same room for the entire visit, she may want to get up and leave, if so, let her. They will have a lot of questions for your Dad.
Just remember, these are medical folks who have seen a lot of Alzheimer's folks. Just take a deep breath and let happen what is going to happen. In the end, it will be for the good, as they should be able to give your family pointers on what to expect next, and how to handle it.
My next-door neighbor just went through a similar situation, she lived a couple of hours drive away, and her sister moved in with mom after dad died and everyone found out how bad mom really was. My neighbor went back and forth every weekend for almost 2 years, to give her sister a break. She used to tell me how guilty she felt when she would head back home on Sunday night, and when her mom finally passed a couple of months ago. It is a normal thing. No one wants to see a loved one suffer...we don't let our pets suffer for example, but we suffer along with our parents or spouses when they have Alzheimer's, or cancer, or Lou Gehrig's disease, etc. The important thing is to do what your loved one would want as much as possible, keeping them safe and well-cared for. And with Alzheimer's, a time comes when you have to do what is best for the caregiver (your Dad). From what you have said, it sounds as if that point has been reached.
Keeping you and your family in my thoughts and prayers.
Suz
My dad told her about the attorney and the people coming to visit her. Now, she is upset and paranoid. We told my dad to stop telling her, and so did our attorney. He told my dad exactly what you said.
DeleteAlso due to moms diagnosis, the attorney hand delivered everything to the judge yesterday so things can be expedited. I hope they do the visits separately. And yes my dad has reached his breaking point. He has tried the best he can, but just can't do it anymore on his own.
Its so sad, because years ago...my sister and I noticed something not right with mom, we tried telling dad but were ignored, he did not want to face it or accept this. But, now he has no choice. I just pray that God will intervene soon.
Suz, I can't thank you enough for all your advice...I really appreciate it. Since I have no local support group to go to, its helped me talking to you. Much love sent to you and your family...
The hard part for your Dad is that they have been married for how many years? Just like with you and Senior...I'm sure that your Dad is used to sharing everything with your Mom. And it is very difficult to keep secrets from someone you love, even if it is for their own good. Even good secrets, more especially the secrets that you know your loved one wont like. I would encourage your Dad not to tell Mom anything else and hope she will forget all about it. One of the good/bad things of Alzheimer's is the memory issues. As much as it can drive you nuts, it does have it's up-side. :)
DeleteAnother thing to remember is that all older folks have a fear that someone "is gonna put me away in a home". Even older folks who are healthy. More so for folks with some physical or mental health issues. And paranoia is very common in Alzheimer's.
Another thing to remember is these days any time someone is having memory issues, or increasing confusion, or personality changes everyone thinks Alzheimer's. There are several different types of dementia, Alzheimer's is only type. The most definitive method to diagnosis Alzheimer's is an autopsy after death. The docs can tell a lot with an MRI scan, but I don't know if your Mom had one done, or if she would even be willing or able to co-operate to have one done. Usually the diagnosis is made based on a history or what family/friends tell the medical professional, and on the basis of something called a mini-mental exam, which is just about 20 questions, like what is the date, day, who is the president, what is your address, etc. They may have them do a drawing of a clock and put the hands and numbers on it in the correct spots, or have them do subtraction of 7's from 100...I once told the physician assistant I was working with to never diagnosis me on the basis of my math skills as I couldn't do serial 7's now (I was in my early 30's)...lol
However, in the day-to-day handling care of someone with any form of dementia, it doesn't matter whether it is Alzheimer's, or senile dementia or one of several other rare forms, dementia is dementia.
Best way to handle someone with dementia is stick to a routine, and keep things quite and low-key. There are meds that can help with the memory issues, sleeping issues, and depression. These are all things that will more than likely be done when/if she is placed in a facility. Hospice is another option. It isn't just for cancer patients any longer, but for anyone with a chronic progressive disease which can end with death within the next 2 years. Alzheimer's certainly qualifies. Especially if she isn't eating much if anything and her ability to bath/dress is declining.
JUGM, I don't know if any of this helps. I hope so. If you wanted to talk, I'd be happy to do so, but I don't know how to get you my number.
Take care of yourself,
Suz
They ordered a Scan last year, but she acted out so horribly in the tunnel that they had to stop it, and could not get a clear image, but where able to determine from what they did get is that she has been having mini strokes.
DeleteShe took the little mental evaluation test, and did okay the first time 2 years ago, but the most recent one she failed miserable.
my parents have been married for 60 years. So its very easy for me to see and understand how he feels, its hell on the spouses.
but, now the attorney is invovled and has hand carried the paperwork to the judge, the ball should be rolling faster now.
My mom is a medication hoarder, so my sister has been finding all sorts of stashes in the house. She is making a list of everything and emailing it to me. She has found everything from vitamins, to laxatives to expired prescriptions... mom has been upset about it, so my sister filled one of the bottles with mini-mentos and told her the pharmacy changed her prescription..lol
Suz you have been very helpful and I appreciate it so much. I will do post from time to time about how she is doing and how the court issue goes...
Much love to you and your family
Good for your sister!! Tic-tacs work too sometimes. :)
DeleteI don't know if you are a reader or not---me, if it's not red hot or running away, I want to read it---but the book The 36 Hour Day is an excellent source for caregivers/family dealing with dementia folks.
Just thought you and your family might find it helpful.
Hoping things go smoothly for your Dad and sister, and by all means, post up-dates on how it goes.
Take care,
Suz
PS More chicken updates too please :)
It's truly hard on the family. Thoughts and prayers for y'all.
ReplyDeletethank you!
DeleteJUGM,
ReplyDeleteSweet Angel, you are not bad at all. You are doing what is needed to get your Mother the help she needs. This disease makes it so hard for your Dad and your family to take care of your Mother. Having the diagnoses, and the legal help your Mother will get the medical help and assistance needed. This disease robs people of their brain, I've lived this with my Mother. If there is anything I can do to help, or if you want to just talk about it I'm here for you.
I'm sending hugs and prayers to you my dear friend, Senior, and your boys.
Hey my dear Angel... I know you have gone through this all. Its going to be a long uphill battle with the court issue. Every day she goes down hill more and more.. Just pray for Gods mercy.
Deletesending hugs your way too...
It runs in my family although my dad seems to have somehow managed to avoid it for years longer than my grandparents or his grandparents did. Not sure why. We also never had issues with resistance so I have no well of experience to lend you there, or at least resistance at the level you are speaking of. I remember it was a huge fight to finally get the cars away from my grandfather but not nearly as hard to get him in a local care facility. By the time that happened he didn't really know us anymore anyway so being alone didn't hurt him. I would still go by and see him weekly but for the last year of his life he didn't know me nor care if I was there. One time he did say he thought we must be related but that was the closes he ever came.
ReplyDeleteTrouble I see is my experience was almost 30 years ago and this is a different world now. I think you are doing the right thing under the rules we are forced to live by.
It runs on both sides of my family and that scares the hell out of me and my sister. Hopefully due to his nasty nature...my brother will get it.
DeleteI think the sad thing here with us, is that there has been so many break through s and advancements with Alzheimer's, that my mom could have been helped but, due to her stubbornness and my dad ignoring it...that help did not happen.
Mom does not remember her grand kids names anymore and I am referred to as "the lady that comes to visit"...
I just hate the fact it has come down to having to go to court to get this legally done so we can get her the help she needs if its not too late.
My father had a stroke and literally went crazy. He lived for seven days after that, and had to be restrained most of the time. We were never close but he always had dignity until that happened to him. He was very religious and firmly believed in an afterlife. When he passed away, it was hard on my mother (they were married more than 50 years), but I think she was also relieved not to see him having to be treated like a dangerous child. So I don't think it's bad of you at all to feel like "passing" would be better for her than where she is now. Quality of life defines life, in my opinion.
ReplyDeletemy parents have been married for 60 years, and I know its going to be hard on my dad when the day happens, but I also know he will feel some relief, that she is in a better place and finally at peace.
DeleteYes, i agree quality of life, and right now my mothers quality of life is not good...