New Here(14)

Tarri

Hello.  I'm new to this space.  The message board, and the world of living with this ugly disease.  My 58 year old husband started acting "out of character" a couple years ago, and progressed to the point of me being ready for a new life.  My best friend convinced me that perhaps he needed some medical help.  Several months of tests and appointments and we received the life altering diagnosis of Alzheimer's.  I don't know how to do this.  I hate it.  It hurt.  I'm lonely.  I miss the man I married and shared my life with, and I constantly feel guilty for those feelings because I can't imagine how terrifying it is to be him.  

Some days are ok, some are not.  None are what they used to be. And I am terrified of our future.  My once loving and attentive husband is distant, dismissive, selfish, angry, obsessive and sometimes aggressive.  I feel like the retirement we have been looking forward to for so long has completely disappeared from sight and has been replaced with a nightmare.  And then comes the guilt for feeling like that.  Am I the most selfish person there is?

June45

Tarri,

I am glad that you have found Alzconnected. I think everybody here remembers how they felt when they finally found out what was wrong with their loved one. All that you are feeling is spot on. There will be others here who will tell you the practical things you need to do...listen to their advice.  The only advice I will give you for now is to let go of the guilt! You are not selfish!!!!

Tarri

June45,

Thank you. I tell myself that guilt is a wasted emotion, but I’m not very good at listening.  

Ed1937

Tarri, welcome to the forum. Sorry you have reason to be here. But you have found a great resource in this forum. People here will help you get through this disease. The only thing you have to do is ask questions and/or read all the posts you can.

You didn't indicate whether or not you have seen a CELA (certified elder law attorney). If you haven't, this is one thing you really need to do early in the disease. If you wait too long, you will surely be sorry. The first visit will likely be free of charge, but verify that when making an appointment. 

A CELA will show you how to protect any assets allowed by law. This is VERY important. They will go over everything they can do for you, and they will tell you what the cost will be. This is money well spent. But remember that there can be large variances in costs from one lawyer to another, for the same services.

Since he has early onset, he will be able to get help from Medicare. Others will give you more information on this. Best of luck to you.

anneleigh

Tarri,  welcome to this forum.  Read as much as you can about ALZ and vent whenever you need to.  We are all in this together unfortunately.  I have learned so much from this group.  Take care~

Crushed

I've been on this road 11 years.  Sept  2010 my lovely brilliant physician wife  failed the clock drawing test in her  Dr. office I was terrified.  She was 58.

all I can tell you in the strongest terms is do not feel any guilt no matter what

You did not cause this disease and responding to it is more that almost anyone can do.  

All you can do is what you can as long as you can.  MAKE NO PROMISES OF ANY KIND

to him or to yourself.   I was DW's sole caretaker for 7 years.  it almost killed me. The stress can be  incredible.  You need absolutely first class legal and financial advice.  

Resolve that YOU will survive.  you will do whatever it takes to keep yourself alive.

Have you filed for social security disability etc?

Fill in your state.  We can help .  how old are your kids.?

 

Tarri

Thank you all.  We have consulted an attorney and learned what we can.  My husband is still working.  His employer has allowed him to stay on as long as they can safely accomodate him.  A blessing for sure.  Our children are adults.  Or daughter lives in Washington state and our son lives in the same community we do.  Since our recent family vacation, our son has pretty much lived with us.  On vacation, my husband did not do well.  Being out of his familiar surroundings was hard and he was often aggitated and on one occasion got a little aggressive and hit me in the back of the head.  My son had a HUGE issue with that and has not really left me alone with him much since them.  I think he is afraid for me.  I don't feel unsafe, but I am not sure how to convince him that it was, as of yet, an isolated event.  All these changes in our life are hard to navigate and I am not sure what is ok and what is not.  It was only one year ago that we moved to a home that we have worked and hoped for forever and now I feel like I am living here with a stranger and my son.  Certainly not what I expected.  All my dreams of dinner parties, and outdoor picnics by the water with family and friends seem like fantasies.  

Thank you for the support and advise.  I will take all I can get.  

In terms of legal advise, is there anything specific that we should know?  It didn't really seem like there was a lot we could do other than the obvious POA and Advanced Directives.

Crushed

Tarri wrote:

Thank you for the support and advise.  I will take all I can get.  

In terms of legal advise, is there anything specific that we should know?  It didn't really seem like there was a lot we could do other than the obvious POA and Advanced Directives.

My wife's care in her facility is $140,000 a year.  97%  of Americans need medicaid for alzheimer's.  Unless you are in the 3% you need medicaid planning yesterday

Tarri

That was exactly what I tried to do. We saw two different attorneys and didn’t get any concrete advise. We were basically told there was nothing we could do but wait until he needed it. It was a very helpless feeling.

Crushed

Tarri wrote:

That was exactly what I tried to do. We saw two different attorneys and didn’t get any concrete advise. We were basically told there was nothing we could do but wait until he needed it. It was a very helpless feeling.

If you effectively have no assets, they are correct. However unless you are already working the key for your future may be finding a job.  See if your husband's employer is sympathetic.  Your earnings do not affect his medicaid. In some stats getting home support is more likely if you are employed. This is just one of the areas that you should be exploring.

Elshack

Tarri wrote:

 On vacation, my husband did not do well.  Being out of his familiar surroundings was hard and he was often aggitated and on one occasion got a little aggressive and hit me in the back of the head.  My son had a HUGE issue with that and has not really left me alone with him much since them.  I think he is afraid for me.  I don't feel unsafe, but I am not sure how to convince him 

......................................................................................................................................................

 If your husband hit you in the back of the head have you told the neurologist as there is medication that can help control aggressive behaviors. I can understand why your son is worried.

banpaeng

Ms. Tarri,  I to saw an Lawyer.  He recommended POA, etc.

I listened to the folks who had been through this crap (my word for Alzheimer's) on this board.  Seeing a lawyer will only land you in trouble.  You NEED a Certified Elder Law Atty (CELA).  There is a site which list these by states.  This site will not let me post links so just google it.  Once I talked to one of the CELA It will be night and day.  I actually talked to two CELA lawyers.  Actually more.  I had prices from 4500 to 15,500.  You need to shop around.  However please do it.  From what you wrote you have some nice assets (I am guessing a waterfront place) so protect it all.

CStrope

Tarri, I too am 58 and am not adjusting well to this new path we've been forced to take.  I agree, thinking about the retirement and plans we originally had for this time in our lives can be extremely disheartening.  I have worked hard, and been a caretaker type person my entire life, but being a caretaker for my DH was not part of the "deal"!

I get angry, then I feel guilty, then I cry.  Repeat!  

Some days are better than others.  Some days are pretty bad.  We are only 7 months AD. (After diagnosis).  People will say remember to take care of yourself....you'll find that is very difficult.  So hang in there, reach out to this group, and don't feel bad about any of the guilt, anger, and every other emotion you may feel.

Tarri

Crushed, 

Thank you for your advice.  I appreciate it.  I do have a professional career.  Have all my life.  We are certainly not in the 3%, and have worked hard for what we have.  I fear losing it, and that was what I attempted to protect and after meeting with two different attorneys was given the impression by both that there was little to be done.  As I continue to read these posts, I learn of CELA and will do some further research along that line.  Hopefully there is more I can do.  

Again, thank you.

Tarri

Elshack, 

Thank you for your concern.  I have a very open line of communication to his neurologist.  We were acquainted prior to the diagnosis, so I am very lucky to have a pretty direct line to him.  He suggested therapy and that is helping.  I assume at some point medication will also be needed.  This all just SUCKS,  Sorry.  I am not doing this well.  I hate it alot!

Tarri

banpaeng, 

Thank you so much.  I have not heard of CELA before.   I will do some research.  THANK YOU VERY MUCH.

Tarri

CStrope, 

YES, YES, SO MUCH YES,  I feel all of those things.  Thank you for making me feel more normal and less awful and selfish for feeling them.  

I hate this, I am not doing it well, I don't know, I'm angry that I have to learn how, he has always been the healthier one, this was not part of the deal.  We were gonna be those crazy old farts walking down the beach in Mexico holding hands and laughing like kids. And now tears.  Man this sucks.  

Thanks for listening

Iris L.

Tarri wrote:

Elshack, 

   He suggested therapy and that is helping.  

Therapy for the PWD (person with dementia) or for you?  

You say your DH is still working.  Do you think he would be able to post on the "I Have Dementia" message board?

Iris L.

Crushed

Tarri wrote:

Crushed, 

Thank you for your advice.  I appreciate it.  I do have a professional career.  Have all my life.  We are certainly not in the 3%, and have worked hard for what we have.  I fear losing it, and that was what I attempted to protect and after meeting with two different attorneys was given the impression by both that there was little to be done.  As I continue to read these posts, I learn of CELA and will do some further research along that line.  Hopefully there is more I can do.  

Again, thank you.

Whether there is anything that can be done depends on how your assets are structured.

 Here is a start

https://www.elderlawanswers.com/medicaid-protections-for-the-healthy-spouse-12019

Ernie123

Terri: so sorry you have the need to be in this forum but I am so glad you have found it and have shared your burden. As you have seen much good advice is available here. I have a couple of suggestions based on my experience to deal with the emotional side of your life. My DW was diagnosed in 2012 and has been living in care for about a year and a half. For me the biggest challenge has been dealing with the emotional turbulence of being a caregiver. You described how you are feeling a bit overwhelmed by your emotional distress. My first suggestion is to recognize and accept those feelings as normal reaction to what you are dealing with. It is ok to cry, feel angry and frustrated. If you understand what is happening to your brain and why, you will be able to deal with it more effectively and not let it overwhelm you. I found that attending workshops sponsored by the Alzheimer’s Society about caregiver stress and grief was very therapeutic for me. I met others in the same place as myself and sharing our stories was somehow comforting. I joined a support group that meets monthly, now on Zoom, and I now have a group of friends who are all on the same journey but at different stages. This is important because in my experience a lot of your former  “friends” will fade away. Many people are afraid of Alzheimer’s and don’t know how to  interact with a family dealing with it. So you may find yourself feeling increasingly isolated. You will answer the routine “how are you doing?” with a superficial smile and say “ok” because you know they don’t want to have you unload for an hour on how your life is disintegrating and you are terrified of the future.  Accept you cannot do this on your own and listen to good advice from your doctor, informed friends and family and counselors from Alzheimer’s. When your brain is a snow globe, you can’t make good decisions on your own.

The old saying “ God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference” certainly applies here. The wisdom to know the difference will come from accepting support and informed advice from others such as those you will meet on this forum.

susan4665

Hello, I'm Susan and looking for a place to help me deal with the suffocating guilt I feel.  My suffered a traumatic brain injury as a result of a motorcycle accident I witnessed (we both were wearing helmets).  After a year of therapies and home care I couldn't handle phone calls that he was on the roof looking for the basement.  We live in AZ so there aren't basements here.  I'm not 100% he really got his memory back.  He has severe dementia and some days he doesn't know me.  Our marriage was on the rocks before the accident and I had asked for a divorce.  He spent 90 days in the hospital then 6 months doing therapies that he fought all the way through it.   I was able to get disability right away and did looking into Elder Lawyers.  Founds a great one and after the painful task of spending down money, I was able to get him on Medicaid).  He has no short term memory and needs help showering, etc.  He can still walk.  He no longer knows how to use the phone and yesterday he barely spoke to me.  He has sever aphasia so it's hard to understand exactly what he is saying.  I'm trying to move forward but it's soooo hard.  I feel so guilty when I think of who he was.  His 3 adult children do not visit... so sad.

Treading_water

I have all those same feelings. My husband was diagnosed at 59. I’m 54. 

All of our plans for the future have been trashed. Everything I planned for my life to me at this stage is upended. And my best friend..my husband..the one person who I could always count on for good solid advice is gone and replaced with someone else. That comfort and security is gone just when I need it the most.

I don’t know if it helps to know you are not alone but you are not.

Rescue mom

Several of us here have talked about the grief and difficulties of dealing with a person whose body is here, but whose mind and personality are gone. It’s like an ongoing grieving process, and yes, it’s hard. Everybody has to find ways to get through it. Yea, it’s terribly lonesome to lose your partner, but once the disease gets stronger, they are lost to us even though a body remains.

In my experience, it’s much much better to stop asking questions, especially the “why did you..” or “why do you” etc. type of question. They can rarely explain or tell you, and it frustrates and angers them. Just try and go with it, unless of course they are putting themself in danger. Don’t ask, tell.

If meds are a regular problem, you might look into ways to get them inside him without him realizing. Maybe combine with food? Many, but not all, can be ground up and undetectable in food, but check first to be sure grinding is OK with those meds. Sometimes bribery works, like saying “take your pills then we’ll get ice cream.”

Buggsroo

Tarri,

Please don’t feel guilty, you didn’t cause the disease.

The feelings of dealing with my husband have gone from, rage, anger, deep sadness and some flashes of humour. He can be very difficult but he also can be very sweet. 

I have had to take care of everything he once did. I am now the housekeeper. No way did I sign up for this, but I am here and well I have to deal. I have more self confidence because I am making all the decisions, but I miss my wonderfully funny and quirky husband.

Sadly this disease takes no prisoners. This place is great, everyone here no doubt has felt what you are feeling now.