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Just Ranting and Venting
Hayleigh
Posted: Tuesday, June 18, 2019 11:15 PM
Joined: 6/18/2019
Posts: 1


As a seventeen year old there are a lot of things on your mind. School, friends, learning to drive, going to the movies. But you never expect that your world could be so horribly flipped upside down by one trip to the doctor's office. You never expect to hear the words ''you have dementia'' come out of their mouths. You don't expect the anger, sadness, and anxiety that comes along with it. This is all new to me and I'm still trying to understand why this is happening to my mom. The most wonderful woman I have ever known. I've seen her in a hospital bed dying, only to be shipped off to a psych ward for treatment. Just when I think that I finally have my mother back, poof! She's gone again. She has never been the same. She sleeps constantly and when she is awake, she has nothing to say. I'm losing my mom everytime she has another one of her episodes where she is convinced that my dad has turned me against her. It hurts so bad. Why is this happening?
Jo C.
Posted: Wednesday, June 19, 2019 5:47 PM
Joined: 12/9/2011
Posts: 9971


Hello dear Hayleigh, and a very warm welcome to you.  This is a difficult place to find yourself as your writing states.  I am truly so very sorry and can well understand what you are saying.  What has happened is so unfair and your mother and your family certainly did not deserve this, nor did anyone do anything to cause this to happen. 

Has anyone in the family given you support that feels comfortable?  It is by far best to have good connections to build a support system for ourselves whether family, through counseling, friends, church, school, etc.

The Alzheimer's Assn. has a wonderful Helpline that can be reached at, (800) 272-3900.  If you call, please ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are wondereful with support, have a lot of information, can help explain and can also help us with our problem solving.   You will be welcomed, and you can call as often as you need or wish to.

It would also be very valuable to have a counselor to speak with.  That can help alot.  I do not know whether you are still in high school, or are graduated.  If still in school; you can call your district office and ask to speak to their psychologist.  That person should be able to give you the name of someone in the community who is good at what they do and who can be good support for you and help you work your way through this.  If you are still in school and when school is in session, you may be able to have appointments with the psychologist assigned to your school..  You deserve support.

If school is out for the summer; there may still be staff in the district offices who can perhaps give the name of a good counselor in the community.

As has already been shared, you have ended up on Musings Forum; and while that is okay, it does not get very many Members here.  If you go back out to where you first came in, you will see on the grid, the words, Caregivers Forum.  That is the place to be for much more input.  You do not have to be caregiver to go there.  That is where family members share, support and vent.

Your parents have a loving and deeply caring daughter who is grieving; you are a blessing, but you also need to have your own support and a safe place to work things through. 

Please do let us know how you are and how things are going, we will be thinking of you and we truly do care.

J.

 


Dreamer Lost
Posted: Wednesday, June 19, 2019 6:51 PM
Joined: 3/7/2019
Posts: 236


Hayleigh, I also 2nd  about trying out the Caregiver's Forum as there are others a little closer to your age and some with children your age.  It is wonderful that you are trying to educate yourself on this disease as it does help to at least know a little about what to expect.  As Jo C. said, please reach out to those around you and develop a good support system for both you and your mom. I hope you are close to your dad and that you can lean on each other during this terrible time.  Please take care of yourself first, as I am sure your mom would want you to. I'm sure she would want you to enjoy your friends, going to the movies, so don't stop doing those things.  Please don't take any hurtful words to heart as their brain is not working and don't mean the things they say.  They are confused and lost.  None of us know why this is happening to our LO, we learn to accept it and enjoy what time we have with them. Peace and Strength be with you.
ladyzetta
Posted: Wednesday, June 19, 2019 9:42 PM
Joined: 2/16/2017
Posts: 506


Dear Hayleigh.

There are a lot of Moms and Dads here. Please let us help you. Ask any thing you want someone will have  a answer. Please vent if you need to We have been there and done that. 

The people on these Boards help me very much when I was taking care of my DH.  You will get a lot of comforting advice. Take care and feel free to reach out for help. Hugs Zetta 

 


markus8174
Posted: Sunday, June 30, 2019 8:37 AM
Joined: 1/25/2018
Posts: 531


Hayleigh- I tried to reply but my message seems to have slipped into limbo. I'll try again.

I can imagine how difficult this diagnosis is to you and your family, but I want to make 4 important points that may help:

1: Very smart move to find this board. The members here can offer advice and understanding that you will find few other places. If you read the posts of a few members that seem especially helpful to you, send a friend request. That way you can message someone privately on issues you don't want to post on an open forum. I hope you are not alone in this. You will need other people to help get you through this. I'm 60, and find I need more and more help.

2: There is thought to be a familial component to this disease in some cases. It is by no means absolute. Only 5-10 % of individuals with an Alzheimer's diagnosis can find a strong family link to other sufferers of this disease. None the less, there are steps you can take now to help ensure your future children don't have to hear the news you are getting about your mom. My email is: markus8174@yahoo.com. Send me a email and I will forward the information I gave my granddaughter who has Alzheimer's on both sides of her family tree.

3: There is no "cure" and may not be for years. There are promising interventions your mom can try to help slow or reverse the progression of the dementia for a while. Please read through the "Clinical Trials" board. There are a lot of very sketchy "cures" out there, (and on this board), but there are also some promising interventions you and your mom can try. A sympathetic primary care doctor can be a lot of help in guiding your mom's treatment. Do not accept "there isn't much we can do" for an answer. I'm a nurse and I would be happy to send you an email of the treatment plan I have used with my wife. (or you can search my posts, but a lot of my messages are just ranting or venting).

 4: Carpe diem. You don't want to live your life with "I wish we had done more with mom while she was still able to enjoy it".  Don't let your moms illness steal your life as well, but that doesn't mean you can't enjoy time with your mom while she can still participate.


bobwx
Posted: Tuesday, July 23, 2019 4:24 PM
Joined: 7/23/2019
Posts: 6


Hayleigh,

I feel your pain; I can't help with easing it other than to say I feel that I'm in a similar spot and know what you're talking about. It's not my mother but my wife (of 49 years). All the good things that you think back on seems to be shot. Why is this happening to any of us? Why do our loved ones have to suffer through this?

My wife isn't in a hospital bed yet but I see he dying a slow death - painful to me since I'm losing my baby. I have no answer for you as to why it's happening. It's just cruel to your mom/my wife and even crueler to those of us that care about them. I don't want to go down this route but how could a just and loving god do this do any/all of us. We don't need this kind of trial. You just want your Mom back; I want my wife back.

There are the standard answers to your grief - ALZ helpline, support groups, etc.You find what works for you - each of us is different. This is such a trying time. I cry all too much to admit. At this point we all need someone to commiserate with - just to listen to our frustrations, our disappointments, our growing grief. It's all too much to handle.

It's early for me but I don't see that I'm ever going to be able to handle this. I have a son (in SFO, I'm in CHI) who's understanding but he just doesn't know what life with Mom is when she asks 'Do you live nearby?" 

I can't say suck it up and move on. I just don't know how to deal with any of this.