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I Have Alzheimer’s or Another Dementia
Worried About Son
Dear Friends, just checking in. Austin has been having stomach problems so I started him on Zantac over the weekend 75mg. Took him to the doctor on Monday and through exam her diagnosis is Gastritis (inflammation of the stomach lining). So, she doubled the Zantac to 150mg 2x/day. He can't eat anything spicy or greasy, he has to be really careful, so we are doing alot of soft foods and veggies. He actually told me that it was my fault! If I didn't have this disease, he wouldn't have stomach problems. Sad thing is, I wonder if he is right? He is only 17. I did try to talk to him and explain to him that his OCD probably adds to it as he worries about EVERYTHING and then some. He really could use prayers right now.
As for me, I am staying busy with my ebay and trying to keep my house clean. Need to do laundry today.
Thinking of you all! Tracy
Hi Tracy, glad to hear from you.
Austin is working on an ulcer at such a young age. If you want to help reduce his stress, please start making plans for whenever your lease is up on your apartment to move to a larger area so you can start getting some help in the home and start using public transportation to go where you want to go.
Right now, he is responsible for you, whether you want to admit that or not. He is the only thing between you and the world and the stress is eating him alive. Imagine being 17 and knowing your mom has been told multiple times not to drive but is still driving. And that's just ONE thing going on.
The only thing that will help here is to make changes so you are receiving assistance from someone other than Austin. He's too young for all this.
You had said in the past that the area you are in makes it impossible to get any daily help and that is why I'm advising you to move somewhere where you can get help.
As always it's good to hear from you.
Please listen to day2nite's advice. Both you and Austin have too big a load to carry.
You have many friends here on the board but we are too far away to physically help.
Please involve your chapter for the good of both you and Austin.
Hi, Tracy. I want to chime in on the suggestions that you move. I'm moving from a rural area to an apartment in the city of Seattle at the end of this month. The reasons include it has a great transportation system for when I can no longer drive, lots of services within walking distance (groceries, doctors/hospital, restaurants, movies, banks, walking trails, etc.), and the Alzheimer's Chapter is only a 10 minute bus ride from my apartment.
Talk to your son about what he wants to do. Would he want to move with you and finish high school in Billings or Helena (your Alz Assn chapter is in Billings), or if it's possible, would he prefer to stay in his current high school if he can find a family who will take him in during school days, then stay with you on weekends and/or school breaks? There will be so many more resources for you and Austin in Billings or Helena. Austin will be more likely to find a job there, too.
First of all, Austin and I DO talk, we have open communication. Why would I want to move to Billings? He has grown up in this school in Buffalo and wished to graduate there as this is his senior year.
As far as to what happens next, there is stuff that you all don't know as I have never told you. Austin is an AWEOME son! He is the best gift I have ever been blessed with. I am glad to have him in my life but sorry for the disease.
You see, Austin is has a learning disability along with mild tourettes & OCD. He is a senior and according to tests that he took a few months back through the school, he is at a 7th grade level in most areas. A few areas he is in the 10th grade level. Regardless of all that he is a GENIUS when it comes to computers. That is his passion. He wants to go into the military, but scored too low.
It is a concern of mine that he will even live as his own for some time as his maturity is low. Example: When I took him to the doctor the other day, the nurse called his name. I looked for him and he had snuck outside. I opened the door to holler for him and I heard this childish sneekering, I look to the side of the building and he was peeking at me just like alittle kid and laughing. I told him it was time to go in and see the doctor and he just laughed. His behavior is like that alot. We laugh alot together, many times for no really good reason.
He is the sunshine in my day regardless of his situation. As for the driving, he does 90% of it. I'm terrified most the time, but I know he has to learn and build confidence.
As for me making plans for my future, Ihave been there already and visited that. But I really can't decide anything until I know what he is going to do after graduation. He wants to go to college. He has an IEP in school and they don't have those in colleges, they don't make allowances for diagnoses and learning disabilities. I do think if he stays with computers, he would do fine in college. My wish is whatever his wish is.
I am trying my hardest not to burden him anymore than he already is, but if you know anything about OCD, they worry about any and everything. I doo see that he gets time away with his friends, next week he is going to Kansas City for an 8 day school project. I think that will be great for him as well as we need the time apart.
I think that in dealing with the hand that we have been dealt, we are doing pretty good. Yes, I agree, Austin is too young for ulcers or any stomach trouble. But I honestly don't think all the blame should be put on me.
He is now coming to a crossroad in his young life where he is still a kid at heart and most times at maturity, but is also becoming an adult. I am doing my best to help him transition at his ability.
As for my chapter, they use to be wonderful! they haven't been much help during this time. Maybe dealing with different people is part of it, they don't seem to be as knowledgeable or helpful in our situation.
I pray daily that God will lead me and keep us safe. I pray that he will help me to make the right decisions in our lives and go from there.
Thank you, Younghope, for clarifying. You are a great Mom and Austin is an awesome Son. Your post clarified much. Joy and blessings to the two of you! And please keep us informed on how you and Austin are doing. We really care about you.
Tracy, I know you are trying to take care of yourself as best you can, but obviously the stress is causing him gastritis.
Instead of waiting for him to make decisions on his future, I think YOU need to make your decisions first--with that done, he will then be free to do whatever he wants.
Stress will also cause a learning disability, OCD and Tourettes to become worse.
I did not mean to imply that you are the cause of his issues.
The bottom line is BOTH of you need help. Living where you are living, it doesn't seem like that help is available.
If you do consider moving in the future, both you and Austin would be more plugged in if you lived in Springfield.
Glad to hear from you. As requested, Prayers being said now and in the future.
May God watch over you and guide you.
Neither one of us want to move to Sprinfield, it is too big a city! I really don't see the difference in help we could recieve there than here in Buffalo anyway. I did think about moving closer to the church after Austin graduates and if he wishes to follow, he may.
It is so easy to sit back and tell people what they should or shouldn't do when you aren't in their situation. From a distance, the things you are all telling me may sound lodgical, but on the homefront they may really not be. Hope that makes sense?
Austin and I, need to sit down and talk about future plans. However, I want to wait until he gets back from his 8 day trip next week and give him time to re-cooperate and then we will talk. Honestly, he really doesn't like talking about the disease. I have already told him that when he is ready to start life on his own that there is a place for me to go, so he didn't need to feel that he had to stay for me. We have discussed that issue already.
All we can do right now is take it one day at a time.
Tracy, I was just making some suggestions to hopefully make life easier for you and your son. You are free to take or leave whatever you like. You are the one living your life, not me. Just thought maybe I could help, that's all.
Bless you for thinking so much of your son and not burdening him as he goes off on his adventure. Praying that it will be a time for him to unwind, to just be a kid and enjoy himself.
Also bless you for not wanting to tie him down when he is ready to be on his own. I'm hoping you have good plans to take care of yourself, however. You sound like you pretty much have thought through all the heavy stuff.
Just a note: You asked why someone would suggest you move to Billings. I think they confused MO as being in Montana instead of Missouri. Montana is MT and there is a Buffalo, Wyoming, not too far from Billings. I guess this could be one of those "Chuckle" moments, if you do that sort of thing.
May God bless you in all your future.
Dear Tracy: I am very sorry to hear about Austin's medical problem and I hope his stomach is beginning to feel better.
From what you have written, I can see this is a very difficult time for you and your son. We here will continue to hold both of you in our thoughts and prayers and our very best wishes; we truly do care.
I know you are doing the best you can under the circumstances. This must be stressful for you. It really sounds as though things are at a point where more assistance is needed on several fronts, but it also sounds as though you have not been able to gain such help. When speaking to your local Alz's. Assn. office, do you speak to the telephone volunteers or are you speaking to a Care Consultant? Do you have a Care Consultant assigned to you that knows and understands FTD and what the challenges are for you and your son today?
If you have not been speaking to a Care Consultant please call and ask to do so and let the Consultant know what your needs are. That would include help for Austin, transportation, someone to help you with your bill paying and banking, etc. I am hoping they will be able to plug you in to sufficient community resources to cover those things that need intervention.
I was wondering about Austin. Who made the diagnosis of Tourette's? Who made the diagnosis of OCD? Were these medical people and if so, were they specialists or primary MDs?
It is true, stress and worry will exacerbate Austin's conditions and even cause new stress symptoms such as gastritis. Tracy, this is NOT your fault. You cannot help having FTD nor can you help the symptoms that FTD is bringing to the table that are making life more complicated for you and Austin.
The exasperating thing about FTD, is that it impacts the ability to see and understand clearly. It strongly affects judgment and reasoning and the person with FTD usually does not realize this. FTD lets a person think things are different than they really are - this is the risk that is a very real one and perhaps some of what Austin is feeling in regard to the FTD. He is neither old enough or mature enough to manage this by himself and his personal challenges make this even more difficult for him.
Austin has been through tremendous upheavals in his life that most kids never have to face and he is ill equipped and seems to have hit a burnout point. It is HIS issues and being able to learn how to do the best with his challenges that should be of priority, but with FTD, that capability is greatly impacted on the negative side of the scale.
From this and your last writings, it sounds as thought Austin is really crying out for help both through his anger, expressions of frustration and now through physical symptoms. This is something that needs help. Could his doctor's office refer you and Austin to a clinic that could begin to help Austin in a holistic manner rather than having a fragmented approach?
Is there some way Austin might be able to house differently during the school week or on weekends so he has more continuity and emotional stability?
I know the suggestion has been made about moving, but for someone with FTD, processing such a monumental task and finances would make that extremely difficult and may bring about unintended consequences. But, if you feel you need to do so at any time, you would need assistance to plan and execute such an undertaking. As it is, it sounds as though this is not what you or Austin would wish to do.
By the way; does Austin have a valid driver's license? I am concerned about his driving from what you have described.
Has anyone met at length with the high school counseling and psych counseling to see what will be available for Austin after graduation? You mention waiting to see what he will do before you change your living arrangements, but Austin is going to need a lot of help from the professionals to be able to have a plan for after graduation. He cannot do this by himself. You cannot do this.
Is there a relative that would willingly and lovingly put the many hours into bringing assistance and intervention for Austion and regarding his future? I can well imagine that Austin is greatly worried about his future and what will happen to himself - it must be awfully threatening and lend a feeling of insecurity.
Which branch of the armed forces did Austin try to sign up for? What part of his appllication did he not pass?
I know you love Austin very much and he is the light of your life. You have expressed this many times. As a mother, I fully understand this. However, Austin is trying to tell you that he needs help and that he is overwhelmed and his coping skills are failing him. From my viewpoint based upon what you have written over time, he is at a crossroads and can no longer cope with his and your situation.
I think that it would be crucial to contact the school district and speak to the school psychologist and get referrals to whatever help is available and let the psychologist know that this situation is critical and Austin is in deep anxiety and stress.
Focus on the Austin part and see where that leads you. Include your contact with Care Consultancy and perhaps you can get one assigned to your case if this has not already been done so you have one individual who knows your plight and understands and will bring continuity to your growing needs.
You are such a caring person and I know how serious this is for you. Know that we here support you with our concern and our words. How I wish it could be more.
Please keep us posted, we will be thinking of you and Austin,
You asked why someone would suggest you move to Billings. I think they confused MO as being in Montana instead of Missouri. Montana is MT and there is a Buffalo, Wyoming, not too far from Billings. I guess this could be one of those "Chuckle" moments, if you do that sort of thing.
Johanna, thank you for your words of wisdom. Austin was diagnosed with Tourettes and OCD when he was about 4 years by a neuro-psychologist. He has since then followed up with a psychiatrist and counseling which he has now quit. He feels counseling is a waste of time as they don't understand our situation. I think I have explained that before.
As for the Chapter, yes, I spoke with one of the consulatants, not a volunteer or helper. No, she really wasn't familiar with our situation. I don't kow why I didn't get to speak to those that I have spoke to in the past. Maybe I will call and specifically request that.
Austin DOES have his intermediate driver's license. He did have a hard time getting it, but he finally passed. He is too over confident in his driving though and makes alot of mistakes and when I try to offer suggestions or correct him, he gets mad at me.
Yes, Austin has anger, but he has turned ALL help away. He wouldn't go to camp this year, he has quit counseling, I have to stay on him about taking his medications right. My youngest brother, the only one in the family that is eaching out to us to offer any kind of support tries to reach out to Austin but Austin turns him away as well. He is angry at him because he was in denial for so many years when we needed them a well. He also refuses support groups. So, I try to make sure he has plenty of time with his friends and as I said next wednesday he is going away for 8 days for a school project.
As for a school psychologist, I am not aware that we have one. He has spoken to the counselor on many occassions, but again, she doesn't really understand.
Maybe while Austin is gone next week, I can do some thinking and come up with ideas. That is all that I have for now.
Tracy, I'm so sorry to hear about all of the problems that Austin is having. This must be very difficult for you to watch and feel helpless at times. Johanna, as always, guides you in good directions.
It's hard to see the trees when you are lost in a forest ! It helps to have someone like Johanna, to kind of see things in a clearer light from what we can sometimes do.
I have nothing to add except that you I will continue to keep you both in my prayers. Just know that we wish we could help more! Please don't loose touch with the individuals at the chapter that you have felt comfortable with in the past.
You are doing a great job with Austin. It just sounds like you both need some help with the problems you are facing.
Thinking of you!
Hello Tracy, you have a lot on your plate and you are trying your very best. I can imagine the worry and stress this must bring. It is a lot to try and deal with, especially when you have your own health concerns.
It would be a very good thing to have some consistent ongoing support which may lessen some of the stress. This can be both someone from the community who would be dedicated and absolutely some professional assistance.
I was thinking, perhaps you could contact your local Alz's Assn. and ask to speak to the supervising Case Consultant. They will probably have a case record of their past assistance for you. You can explain the situation of both you and Austin. Ask this supervising social worker to assign you a Case Consultant who will be your primary contact with the Assn. Explain what FTD is and the impact and the issues you have with processing things, with finance and bill paying, and with Austin and any other issues.
Let her know because of the complexities of your situation, you need a single contact point because otherwise things get lost and it is also difficult for you to process multiple people. Let her know you will consider this person as a mentor AND as the intermediary between you and any other community based helping organizations. Also ask that this primary contact person be ongoing in a consistent manner and that the coordinator will actually keep in touch with you.
Also ask if there is any helping organization that can send a social worker into the house that can also follow you. That would be a tremendous help.
Then I would contact my brother and let him know what the situation is with Austin. Let him know of Austin's struggle with frustration and his losing his ability to cope with what is happening. Then ask brother if he can begin making visits to your home just as a visitor for an hour or so at a time when Austin is present.
These visits should be social and simple. The visits would begin to break down barriers with Austin and he may become more willing to let his uncle into his life.
If your church has any outreach that could come your way, that would be a good thing to. Have you explained to the Pastor what your diagnosis is, and then educated him on what this causes? If he knows this and you ask if there is anyone who could be of assistance, perhaps that would open up another avenue.
There is also the school district. I am sure there must be a department that interacts with severe problems of their students. They may even have a district school psychologist. Tell them you have FTD and then you will have to explain what it is and what it does. Let them know of Austin's profound difficulties and the worries about him AND his ability to move forward after graduation and ask them for all the help they can bring to the table. Let them know you are willing to come in for a meeting, but please let them know how dire the situation is regarding the progressing dementia and lack of support for Austin.
All of us here care very deeply and wish there were a better way to go about things, but we are all far away. No matter what though, we are here to talk to, to vent with and to share.
With a hug and big hopes for you and Austin,
I did call and speak to my CHapter yesterday. I spoke to someone that knows us that has been there awhile and told her the actual consultant was of no help and would she be willing to work with us through this? SHe said of course. So when Austin comes back from his trip in a couple weeks we will make an appt. BUT, like she said and I have said, Austin has turned away all sources of help, so there isn't a whole lot to really do because of that. She was not aware of Austin's own diagnoses, I thought I had told her. Anyway she is aware of it now.
I really don't see a purpose in the meeting either, maybe I am alittle lost here???? I did tell her about Austin's stomach problems and she agress it is the stress,etc. She said Austin is just going to have to be more responsible. Don't quit understand that one??? I think she means from the aspect of turning away all help for whatever reason.
Anyway, we have to go shopping this weekend for stuff he needs for his trip next week. He is sooo looking forward to that! I am for him too, I know he needs a get a way.
Enjoy your weekend.
If Austin will go to the meeting with you, it'd be great. However, I'd make it his choice. Do you have to go there or does the person come to your house?
The person from the Aliz. Chapter knows a lot about different types of dementia including FTD. However, she/he may not know a whole lot about how to deal with the problems Austin is dealing with. Hopefully, she'll consult someone who is knowledgeable. I do feel it's going to take a team effort to help your little family in the coming time.
My thoughts and prayers are with you.
I really don't see a purpose in the meeting either, maybe I am alittle lost here????
Tracy, speaking as a patient who does not have family members living close by, now that I am working with a social worker, it does help to have an adult who understands my situation that I can discuss with. I'm thinking that having one adult knowledgeable about you and your situation and FTD can be of help to you. You have said that the suggestions you receive from the members here do not reflect your own situation, living in your small townand rural area. You're right, we don't know exactly how it is for you, and what you need or have already tried. I'm thinking a personal contact will be able to help you more. Even if you don't need suggestions, you need an adult you can lay your burdens down on, so to speak. Your church members don't seem to understand the added impact of the FTD diagnosis on your situation. They can't, because it is so unusual to most people. I never heard of FTD until I came to this board, and I'm a doctor.The added benefit of establishing a relationship with someone now, is that she will be able to help you monitor the inevitable changes that will develop over time. This is valuable, because often people who are not knowledgeable tend to say "You're fine" when they don't even know what's going on with us. I run into this all the time, and it sucks, pardon my language.I would think that the contact would be for you alone, and not for you and Austin. You could discuss your feelings and anxieties about Austin with another person, and less with him. Often teens listen to our adult anxieties and it comes off to them as nagging, so they do the only thing they can do, which is turn us off or even rebel. This is what happened to me with my teen years ago.We have had several teens post recently about their anxieties about their early onset dementia parents. What can be done to help them? Tracy, you did a lot by starting the Changing Bridges camps for teens. But the teens still have to deal with their everyday anxieties. This is an area that more needs to be done about. But you, Tracy, can do only so much. You need to focus on yourself now.Iris L.
There has been much good input from the folks here. I think that if you had a primary Case Consultant for yourself thru your local Assn. office - just one person assigned to you, that would be helpful. If there is at all any chance to have this person come to your home, I truly believe that would be the absolute best.
Though your primary contact person may not have any sway with Austin, your Consultant can interact with the school district.
This way, your family will have one person for you, and a primary contact for Austin. Though Austin distances himself from offered assistance, it is still ncessary to have him in the loop to follow him and if he sees that he can rely upon his primary person, perhaps he will be more open to help.
In the meantime, you have only this coming year to gain help for Austin as he is graduating next year. After that, obtaining assistance may be a bit more difficult.
By having two primary points of outside assistance - one from the Assn. for you and one from the school district for Austin, it may cut down on some of the confusion from too many cooks in the kitchen.
I hope you continue to come and visit here. You are doing the best you can and I can understand how trying this is for you.
Dear Iris has given such sage advice of the best kind - from actual experience. This is a wonderful idea and I am so glad Iris was helped and so hope that you too can obtain such assistance Tracy.
Dear Friends, tomorrow Austin leaves for his 8 day school project in Kansas City. I will miss him, but we both need the break, probably him more than I. He is excited and this will be his first time away from home at such length and so much on his own. I hope he learns alot from this experience as well as gets some r&r from here.
I guess I am alittle confused here about the posts I have been reading. I didn't realize I was "crying" out for help. This started as simply asking for prayers for my son. I don't really know what I am suppose to be asking of my chapter????
Right now, other than Austin stomach issues, I am at a comfortable place in my life. Austin decided he didn't want to take a trip this summer, but wants a car for his birthday instead, so that is my plan and goal for him. We did talk about taking a Christmas trip somewhere instead, Lord willing if the weather is right at that time.
I have a sense of peace in my life at this time as I already know what is down the road, it is just choosing the time to initiate it and that won't be until Austin graduates.
Can someone feel me in here??? What am I missing?
I guess I am alittle confused here about the posts I have been reading. I didn't realize I was "crying" out for help.