Dear Friends, I wanted to give you an update on Austin and myself. The last few months have been a struggle for me in trying to stay in focus and on task. Austin has brought to my attention that I am more forgetful and my driving skilss are getting dangerous. Austin is having much diffiuclty concesntrating in school and focusing as he is worried about me at home. He had a breakdown of sorts last week and the next day, we went in to the Alzheimer's Chapter and spent 2.5 hours in consulation separately and together. It was decided that I need to get AUstin on my insurance as he does have his intermediate lecense now. So, the arrangements have been made and he will be on the new policy in Mid february. I almost had a wreck taking him to school this morning. I saw the car coming, but yet it didn't register in my mind. I was able to swerve and advoid a near miss. It scared us both. He will take over the driving in February.

He called me from school yesterday and told me he just couldn't focus and that he really needed to see his psychiatrist. So, I called and they fit him in. The doctor increased his anxiety meds and tolld me that he thought Austin was seeing the progression in me and was grieving. He told Austin he would have to go to counseling whether he liked it or not, that it was the only way for him to deal with our situation. So, I found a new psychologist that is suppose to specialize in early onset dementia and we see him next week.

I saw my psychiatrist on Monday, and he told me that I had really progressed since he saw me in October. He said I needed to see my neurologist asap. I am scheduled to see him March 2nd. The sad thing is, there is nothing else he can do for me. He has already given me the best meds to slow the progression of this disease over the 10 years I have been hi spatient.

With the help of the chapter, we realized that I had gotten off track with my meds and was only taking half of the doseage I was suppose to be taking with my meds. That sure didn't help things any. So, Austin and I do our meds together now.

My chapter told me I need to get a care plan in order and they would help me. Austin will graduate early in December this year as he will have all his credits done. I am going to meet with my younger brother and the chapter tomorrow so they can fill him in on what is now and what is to come. Hopefyully he will be the support system that Austin and I need.

As I told my chapter, this has been quite a journey. Many I have known have gone before me and some are just beginning the walk down this path. I cry for Austin, not for myself.

Tracy

Tracey -

I'm not sure you remember me, but we had communicated a few years ago. My husband was diagnosed 11 years ago when he was only 36. He is now in his 11th year with Early Onset Familial Alzheimer's.

Our children were only 7 & 9 when Mike was diagnosed and they are now 18 and 20.I completely undertand what both you and Austin are going through. The children of parents with Early Onset are true heroes in this journey. They lose so much on a day to day basis and the one person they should be able to rely on is the one who needs them most.

I will continue to pray for you both.

Karen

Hi Karen, I am sorry about your husband as well as the loss of you and your children from this dreadful disease. Just remember that each day is a new day and to live in the moment.

I will keep your family in my prayers.

On another note, I am very surprised at the little support received here. I have received one message and this just keeps moving further down the line.

Tracy

Well, Tracey,

Here's another note filled with love and good wished for both you and Austin.

You have many, many friends on these Boards. Weekends are slow, so hang in there.

I am so glad your chapter is there to help and your brother is coming. 

You have been an incredible example to so many on these Boards. And writing what you did took more than I may have been able to do.

The care plan for Austin will also be difficult, but you'll do it.

You've fought so long and so hard, hopefully, when plans are made, you can step back and relax. 

Wow, sure puts my trip with my EOAD wife seem trivial.  My prayers for each of you.  May God give you the strength you need!

Bob  

Tracy, I hope you know that I'm "here" for you and Austin.

Tracy, my dear; 

 You have so much more on your plate than anyone else. But take heart, you will get through this,  you are strong and with God's help things will work out. I am hoping that your brother will be of help, and that he understands the extent of all your problems. Do you have a friend, or someone in your church, that could help with your driving until Austin is able to take over?  You must stay safe for Austin, so that he in turn will be able to help you.

Have you been to a regular MD, or an Alz. specialist - perhaps they might give you more informaton?  And the next biggest thing you should do is call the Alz. hot line. Number is :   1-800-272-3900.

They are available 24 hrs - 7 days a week. They are trained, and very

 compassionate, and will give you a lot of help.  I have used them, as have most of the members of my Support Group - always helpful.  Do it tonight !

I admire you for all the good things you are doing, Do try to give Austin comfort, and love, am sure you do.  It has to be hard, Mothering always is. Maybe he would better off seeing a regular MD, also - or have you gone that route?

When possible, try to get out, walk in the sunshine - keep bright lights on in your house - it's better for you.  Play your favorite music, and dance with it, perhaps start a hobby that keeps you rmind working - and relaxes your brain. Do something just for

Tracy.  My very best wishes to you, and my prayers!

Hi Tracy,

I only wish you the best.  I know it can be hard for what your young son and you are going through.  Although I'm almost middle aged and not as young as Austin it hurts too to see my mom with AD and seeing her decline.  And the thought is scarier if I were to suffer from it.  Recently with the increase of my testosterone levels, I have seen a better increase in memory.  Not all aspects are best, but it is encouraging for me to see this progress.  The neurologist was right.  However, I'm not sure I can hold down a good paying job.  I wish I could go to college, but will the material stick.  I don't know.

Anyway I feel for you because I am also alone with mom and I have no support.  My mom's sisters which are numerous have practically abandoned her.  They could at least check on her several times a week.  They don't all live here but they could at least make her feel better by calling her.  My mom is highly resentful at her family for having abandoned her.  She has two terminal diseases.  Malignant melanoma and AD and that doesn't count the emphysema (luckily she exhibits no symptoms)  And would you believe one of her sisters lives in front of us and she never checks on her.  She could at least give me some respite, but eventually we'll have to pay for it.

I'm sharing this with you Tracy because I know the feeling of being alone with Mom just like you and Austin.  It's hard but see you guys have each other.  I really hope things get better for both of you.

Tracy,  I would like to ask you one question.  Does your son have friends who can support him.  I ask because I don't have anyone to talk to or do things with except my sister and only when she feels like it.  So once again yes I know how hard it is to battle this disease alone.  

John

Dearest Tracy:   I have not sufficient words to fully state how very sorry I am for what is happening with this long, long journey of FTD.

It is wonderful that you and Austin met with your local Chapter - what a very smart and effective thing to do.  You have done the right thing.

Protecting Austin is paramount in all of this.  It is good that you will get some assistance from Austin in setting your meds up each day.  The misfortune is, that even with the meds being poured accurately, it is highly unlikely that this will forestall the advancement and functional issues of the FrontoTemporal Dementia that are now occurring.  I so wish for this to be different..

You have spoken about this moment early on in the beginning of your disease, and I am glad that you are doing your best to handle things.

The person helping you at your Chapter is absolute correct.  You need a good and sound plan right now and this must of course include Austin - the time has come to do this to protect the both of you.  As you know, at this point, things could change on a dime and the plan will be your best protector if an abrupt change should occur.  Do not delay this.

I am glad your younger brother is willing to meet with the Chapter with you and Austin.  What is your brother like?  Is he responsible and will be be helpful to you and to Austin?  It sounds as though he will be since he is going to meet with all parties.

PLEASE - call Austin's school or a neighbor, or someone from church and see if you can arrange for Austin's transportation to and from school with someone else.  It is also time to fuily discuss the issues as they now are with Austin's school counselor.  After graduation, he will not have this service any longer.

DO NOT DRIVE - your disease has brought you to a point where there is danger to yourself, to Austin and to others.  Not only is injury a huge risk, but legal issues could occur.  God forbid there should be an accident, but this must be avoided by not driving.

When the time comes, will your family member be willing to have Austin come to live with them?  A cruel thought to be sure, but this is the reality of something that now must be done as part of you Plan.

You have been and continue to be a valiant warrior in this FTD battle, I am humbled by your strength and courage. 

Yes, Austin absolutely MUST get counseling and professional support.  Of course he is grieving and he must feel hugely insecure.  I am sure that at night, when alone in his bed, he must be dreadfully worried not only about his Mom, but about his own future - he is probably worried about what will happen to him when you must make changes in your living enviironment and he feels this is happening.   As any child in a home with troubles, the child usually becomes very attuned to oncoming changes and  is sensitive to every small nuance of trouble at hand.

Getting a good plan with his input and/or at least his understanding will be helpful for him to know that he will have a home and that he will be alright in the face of things.  It is a lot for a young fellow to feel and process.

We here on the Message Board care very deeply for and about you and Austin.  We are part of your extended "family" and will be here for as much as we can.

BUT - I SO wish Austin could write in and introduce himself and feel our support, but he is at an age that may not feel comfortable with that; I know he has said just that in the past.  We would be so very willing to listen and to talk with him.

In the meantime, do write down all the very serious issues to take with you to that meeting with your brother and the Chapter - that way you can be sure to cover all things important.

Hopefully you will have a Durable Power of Attorney for Healthcare and one for Finance and hopefully have a family member or friend trustworthy to be on your checking account.

You will need to have someone accept being "Guardian" for Austin.  Even if he is old enough by the calendar to be grown, that does not mean he is in actuality prepared to care for himself alone.

You will also need a HIPAA Waiver to give permission to anyone you wish to be able to speak with your doctors in regard to your care when you are unable to manage this - without this Waiver, no one can do so.  THE CHAPTER CAN HELP WITH THESE THINGS IF YOU DON"T HAVE THEM IN PLACE.

You have been very insightful and I am grateful that you are seeking help, I am surely keeping you and Austin in my prayers and will wait to hear how things went at the meeting with your brother and the local Chapter.

With deep regard and with soft hugs,

Johanna C.

Dear Friends, thank you for your support and words of encouragement. You have no idea how much it means, more than words can express.

Johanna, I always look for your insight as you have musch to offer being down this road with your mother. The meeting at the Chapter went very well. I think the staff there got my brother's attention indeed. They explained the disease to him as he told them he knew I was sick but didn't understand it. He will be spending at this time one weekend a month with Austin so they can build on their relationship and Austin has another outlet if needed.

Austin has been talking to his school counselor as well as I. I went and spoke to on one daythis past week and explained it all to her. Austin's doctor also wrote a letter to his teachers explaining the challenges that he is facing at home so they are alittle more understanding of the situation.

It was discussed at the chapter , that when AUstin is ready to leave home that I will need assisted living. With the chapter's help I am seeking out apartments for disabled people thathave staff on site to assit with meds, paying bills, etc. I hope to find a place on get on a weaitnig list so when the time is here I have a place to go as will Austin to stay with my brother.

Today in church I explained it all to them and took a couple of fact sheets about the disease and hung them on the bullentin board. I explained to them there was no cure only medications to treat the symptoms. I explained that Austin would be driving me to church start mid feb. and the challenges that I faced. There were many tears, most of misunderstanding and lots of offers of help with transportation if needed. Lot of hugs and I love yous. My church family has become a big part of my life.

Thank you for being here and listening and offering your words of wisdom. My mind is pretty tired right now, I think I need a nap.

Love always, Tracy

Dearest Tracy,  You have no idea how proud and happy I am for the wonderful steps you and Austin have just taken together!  I hope you can be very proud of yourself as you are of Austin and his help.

As I said on another AD thread, you have been so admired and strong for so long.  You recognize your strengths and weaknesses now and are making all the right plans accordingly.

The chapter and Austin's school and his doctor can all be so helpful to coordinate.  This should relieve some of the pressure from yourmind.  So many people care about you.!!

Now your brother can better understand this horrible disease that you and Austin have been struggling to live with.  The church will hopefully open their eyes now that you gave them information they can read.

Good work Tracy.  You are getting all your ducks in a row.  This is so good for Austin.  It shows what a caring mother you have been and continue to be as you take care of Austin's future and yours.

This is hard for you; we understand that.   I haven't gone through what you have yet but you give me and others a model of strength and hope as we approach our time.

My love, prayers & hugs to you & Austin.

Hey Tracy,

I'm sorry I have been away for a while and haven't been able to be on the boards much.

I'm sad and glad about your news.  I'm sad about your decline and Austin's increasing problems but glad you are the wonderful Mom you are.

Tracy, I'm glad everyone is involved including your church friends.  They can all be of great support for you and Austin.

Tracy, I agree with Johanna that you should NOT drive anymore.  It had become too difficult and too dangerous for both you and Austin.

I am so glad to hear about your brother finally stepping up to the plate.

Thinking of you and Austin often.  Keeping both of you in my prayers.

Peace and hope,

Lisa

Dearest Tracy:   It is true, you are an awesome and wonderful person!   This journey has not been the easiest one, but in every instance you have risen to the top and you continue to do so.

It is good to hear that the school, church, your brother and the local chapter have all come to understand and extend themselves and that you had the absolute wisdom to get them all to that point.

You have made plans that will protect you and Austin and will carry you into the future with a good quality of life for the both of you; you continue to be such an inspiration to all of us.

I agree that getting on a waiting list ahead of need is crucially important, how very wise you are - I wouid take those steps now to ensure your place when needed.

I would do anything to have this all be different and if I could I would.   I hope that the relationship between Austin and your brother begins to flourish and that mutual trust and affection will develop.

Do tell Austin how proud we are of him at how he has risen to the occasion when needs surfaced.  He has been a terrific kid under some very stressful circumstances and he will grow to be a good man - give him a hug from all of us.

You are a good Mom and this shows in how you have made plans for Austin and in how you are accepting the reality of this need, that cannot be easy to do.  It is evident that Austin returns that caring, and that is a good thing.

Do know Tracy, that we here continue to support you as best we can, and we will continue to be here for you.

Thank you so very much for being you and thank you so much for keeping us updated and sharing with us.

With my deep respect and affection,.

Johanna C.

Tracy:  I just thought of something to share with you.

When I realized that my mother would eventually require a different living arrangement, I began to screen different facilities.

This was almost two years in advance of need.  I found a good place and found that they had a long waiting list that could go from months up to a year.

I did not want my mother to have to go to a lesser facility, so what I did was place her on the waiting list far in advance of need even though we were quite a distance from that need. 

In our instance, we were private pay, so I had to give a deposit check.  They put Mom on the waiting list and did not cash the check; they kept it in file.  They were well aware that Mom may not need their services for a year or more, but they were okay with that.  Wonderful.

In about seven months, Mom's name came up to the top of the waiting list.  Through my private agreement with the facility, they took the next person in line, but kept my Mom's name at the top of the list.

So, whenever they had an opening, they would take the next name under my mother's, but kept Mom at the top.  When the time came that Mom required a different living environment, her name was already at the top of the list and within the month we had a room. 

I was sure to get the room while Mom could still manage at home so she didn't have to be placed in a lesser facility and then transfer later. 

What a blessing it was for the facility to do this and ensure Mom would have priority for a room as the need arose.

I wonder if this would work for you too at your place of choice? 

Just thinking ahead . . . . . . . . .

Johanna C.

Thanks for sharing that with me Johanna. I have actually with the help of a Dear Friend (she use to work for our Chapter) started investigating that very thing. I have called and talked to one place and they are sending an application in which my friend is going to help me fill out. But they are an apartment complex for disabled people, many with memory problems. They have someone onsite 24/7. I would need a Doctors order to have HH come in and help me with my meds and stuff like that. It will be a couple weeks before I actually visit the place. I will let you know how it goes.

Love always, Tracy

Good for you sweet Tracy!  You are certainly doing all the right things.

When you do go to screen the facility, since it is an apartment type of set-up, ask them in what sort of circumstances do they no longer keep a resident and what sort of circumstances makes a person ineligible to continue living there.

This is something that is extremely important to ask before hand so one has full knowledge and can make plans for the distant future.  Knowledge is power.

I failed to do this with my mother, and once Mom could no longer get to the communal dining room for all three meals and once she could no longer assist with standing/pivot transfers from chair to bed, etc., they no longer considered her appropriate for their facility and mandated her transfer out.

I found that there is state law that covers "assisted living" apartments and each state has different criteria - you will want to ask what these are in your state.

Where we live, a person must be able to assist the staff with standing/pivot transfers and able to hold their weight on their feet. 

They must be able to turn over in bed independently.  They must be able to go to the communal  dining room for all three meals a day.

Also, in some of the facilities, they also mandated that the resident be able to change their own incontinent supplies independently - I am sure this last is not state law but was facility preference. 

There were also behavioral issues policies and if a resident became a severe behavioral issue especially with aggression, this was also a possible reason for asking the client to move if it became severely disruptive or a potential  danger.

If a facility is an "open" facility and does not have a locked unit, if a person becomes prone to wander off the site, that too can often be a reason for transferring a resident to a different type facility.

None of the above is something that is a concern for you at this time.  However, it is really, really good to know their boundaries far ahead of time so one can have a "Plan B" if it ever becomes necessary.

You can do this and by following the advice of your Chapter friend, there is no end to what can be accomplished to establish a good environment that will add much to the quality of life.

You are truly an awesome blossom and you never cease to amaze me with your grace under pressure.  So proud of you Ms. Tracy!

With love and hugs,

Johanna C.

Thank you for your words of wisdom Johanna. I just got done telling our member John that he was very blessed at getting a second chance at life so to speak as he does not have dewmentia. This has been a long journey, but not one that I would wish upon anyone, not even my enemies (notsure if I have any). But just know that I always look to you for further education of this disease and you have been a blessing in my life. All of my friends here have been a blessing inmy life with this disease, but in my heart, you are special.

Love always, Tracy