Apply Now
RSS Feed Print
Trapped, resentful and wanting out
mrsbob
Posted: Saturday, February 24, 2018 3:28 PM
Joined: 2/9/2017
Posts: 21


You are right.  I tried stopping the meds about a year ago with the approval of his doc.  Things were good for about a month then he went nuts.  Had him in a behavioral hospital for seniors for two weeks.  They put him on all different meds and that helped.

Someone told me that Medicare will pay for the first 90 days but I haven't had a chance to check that out.  Fortunately I am healthy and talking to a therapist helps keep my head out of the noose.  The loneliness is the worst, but I do keep as busy as I can.

Thanks for your concern.

 


elainechem
Posted: Saturday, February 24, 2018 4:25 PM
Joined: 7/30/2013
Posts: 6053


mrsbob wrote:

My DH is 82 + and physically he is very healthy.  When the doc says "oh he is going to outlive us all" my stomach ties up in a knot because I know  she probably is right.  We have been married almost 41 years and the first 35 were wonderful.  NOT perfect by a long shot but really, really good.  Now he is angry most of the time and his mouth can get really nasty. He is in diapers, sleeps 20 hours a day (thanks to whoever said the same) wears the same clothes for days even tho every day I lay out clean clothes for him.  He just puts them in the dirty clothes.

Geez! What a stupid, inconsiderate doctor! He will only outlive you if you die of a stress related disease first. Your husband is NOT physically healthy. His brain is severely diseased. The brain is an organ in the body like any other. The body cannot survive without a functioning brain. Your husband sounds like he's in late stage 6. He is nearing the final stage. When people try to "comfort" me by saying that people with AD can live 20 years, I want to hit them. They have NO idea what I'm going through. If he were to survive another 14 years with this, I won't be around because I'll have long since gone to a facility for the mentally ill. 

See an elder care attorney about financial planning for long term care. It's possible that Medicaid may help to pay for those first three months. I'm using hubby's LTC insurance to pay for in-home care. The policy had a three month waiting period too, but, when I applied, they backdated the start date of the claim and we started getting assistance immediately. So, see an attorney ASAP to see what your options are. It sounds to me like you're very near the end of your rope.

Medicare does not pay for long term care, Medicaid does.

BadMoonRising
Posted: Saturday, February 24, 2018 8:29 PM
Joined: 4/22/2017
Posts: 334


mrsbob,  Please look over the long term care policy. It is likely (mandatory?) that the 90 day waiting/elimination period does not require that charges be incurred before the LTCi kicks in. In other words, you can have your husband assessed now to determine whether he meets the benefit eligibility criteria. You have been caring for him, yes? The policy requires that he first be assessed as having a chronic illness or disability.

In my policy, he would need to demonstrate that he

(a) has a severe cognitive impairment which requires substantial supervision to protect him from threats to health or safety

 OR

(b) that he has a loss of the ability to perform, without substantial assistance, at least two Activities of Daily Living with the loss expected to continue for 90 days. 

If I understand you correctly, he should at least qualify under (a). Please review your policy and consider requesting an assessment now. Or, have a professional review the policy. It is time you have a break, yes?


Twin Mom
Posted: Saturday, February 24, 2018 8:51 PM
Joined: 12/9/2015
Posts: 373


Yes do read your policy, and if necessary have it looked at by legal.  The 90 day elimination clause in our policy required ( in a very  back door way  IMHO) that care actually be provided for 90 days before it would kick in.  I was able to get the policy in force after my DH receiving one hour of care for each of 90 days that did not have to be consecutive but were.  In other words, I spent $4500.00 (1 hour each day at $50 per hour) to get the policy in force.  The trick was finding a qualified agency per the terms of the LTC policy to be willing to do it.  I had a nurse to come in every day to manage his medicines...and monitor any behavior concerns.  The policy has now been in force 2 years and funds my ability to keep Dh at home.
Mike&BrendaTX
Posted: Saturday, February 24, 2018 8:53 PM
Joined: 7/10/2017
Posts: 663


McCott wrote:
  I don't know what a type 2 diabetic end point might be, but why cannot we not even ask about something like this?
 

Diabetic end points include blindness and amputation of toes, feet and legs.  You probably don't want to discontinue his diabetes meds.

Mike


Kenny Ray
Posted: Saturday, February 24, 2018 9:05 PM
Joined: 11/5/2017
Posts: 126


Hischild77 wrote:

I sincerely hope this thread doesn't get deleted. I'd started a post and apparently took too long writing it and an error showed and it wasn't submitted. I'm glad because it was a long long long rant.

Hischild77,

I notice this at times when I take a long time to complete the post, especially using my mobile phone. I appears as if I get logged out and have to go back, login, then submit the post. I get in the habit of copying my entire post before submitting. If the error occurs I log back in and paste it in a reply ...

Ken


Here again
Posted: Saturday, February 24, 2018 10:07 PM
Joined: 1/22/2018
Posts: 121


McCott,

You aren't feeling anything the majority of us are feeling.  I am a 24/7 hands on caregiver for my wife, and I can't tell you how many times I have wanted to throw in the towel.  The one thing that stops me, is my upbringing and my vows "for better or for worse".  Before finding this site I was convinced I was completely by myself.  At least since finding this site I have learned that so many others feel the same way and together we try to prop each other up.

 

I have been able to learn some coping skills here, and they help, but they don't work every time, but then I don't know of anything that works every time.

I also feel trapped and many times have wanted out, but somehow I find the strength to continue the good fight.

The one thing I have to remind myself (not always successfully) is this isn't my wife's fault she no more wants this than I do.

I don't know if any of this helps, I posted it only because I know exactly how you feel.  I feel completely trapped, often times like no one else cares.

We are here to help and to listen and allow you a place to vent.  And please remember what you are feeling in my opinion is only natural.


Kenny Ray
Posted: Saturday, February 24, 2018 10:57 PM
Joined: 11/5/2017
Posts: 126


mrsbob wrote:

We are going in to year six of this journey and the last year has gotten worse almost daily.  I am so angry and then I feel so guilty. I have been so afraid to say anything because I feel like a horrible person. Like someone else said I secretly wish for him to have a heart attack or something like that, then I have to ask God to forgive me because I feel like I am betraying the love of my life. 

mrsbob,
You are not betraying your husband because you want his suffering to end. You are not a bad person because you want your suffering to end also. You are a human being struggling with a horrible situation, sacrificing and trying to care for your loved one as they progress through a terminal disease. Recently, I’ve been struggling with anger and resentment, not at DW, but over the circumstances. It comes and goes, but thankfully it’s not persistent or the bitterness would tear me apart. At times, I just feel helpless in the face of what’s happening. Other times I grieve over the loss of our future, and the ongoing loss of everything that defined our lives. It’s painful to think about being alone when DW is gone, and what kind of existence I’ll have. 

I pray for strength to make it through the day, for guidance to take the right steps, courage to make the tough decisions when I have to, for patience and perseverance.  
I also ask God, in His mercy, to spare her suffering through the end stage. 
Faith helps me to persevere, but the pain is still there. Someday, there will be peace and no more pain. 

 

Ken

Hischild77
Posted: Saturday, February 24, 2018 11:22 PM
Joined: 9/16/2017
Posts: 112


Kenny Ray, I'm slowlyyyy learning how to navigate the reply tools. Not fast enough for me to stop the anguish when something goes wrong though.

I also copy what I want to submit but my paste isn't working for some reason. I then usually just end up considering my reply as not worth it and move on.

I have yet to figure out how to, like you did, the blah, blah wrote with the box beneath. Maybe I'll ask for how-to(s) in a post.


Carolyn613
Posted: Saturday, February 24, 2018 11:41 PM
Joined: 7/15/2016
Posts: 1060


Hischild77, the "blah blah in the box" you can do by clicking on the "quote" button under the post you want to cite. I find that then I can erase the stuff I don't want to quote and keep only what I do want to quote. Then I write my own post underneath. Hope this helps.
Hischild77
Posted: Saturday, February 24, 2018 11:52 PM
Joined: 9/16/2017
Posts: 112


mrsbob, I shook my head at your comment about BM being on his hands. Mine NEVER washes his hands, EVER. Unless he's washing or rinsing something in the kitchen sink his hands don't touch water. He doesn't wear diapers yet. I've tried offering them when we go anywhere, but he refused. He has a problem with 'leakage' and has to visit the restroom upon entering any place within the first 5 mins. Then I have to endure the smell until we get home. He cannot smell anything. Isn't lack of smell a symptom?

The 8-12 cup coffee filters have been my friend for several months now. I use them to open doors, etc in between cleaning all surfaces where DH has access. I buy 2 bundles of 200 every month. Otherwise, I'd go thru too many pairs of gloves and they're more expensive. I save them for the heavy duty jobs.

No manners, no hygiene, no etiquette, no filters. Then again, my DH didn't have much to begin with, yet now it's nonexistent. Being an OCD clean person, I'm finding this to be the hardest aspect to live with.


Hischild77
Posted: Sunday, February 25, 2018 12:04 AM
Joined: 9/16/2017
Posts: 112


Carolyn613 wrote:
Hischild77, the "blah blah in the box" you can do by clicking on the "quote" button under the post you want to cite. I find that then I can erase the stuff I don't want to quote and keep only what I do want to quote. Then I write my own post underneath. Hope this helps.

That was a complete DUR! The stress is messing with my mind in so many ways. Things I normally wouldn't have any problem with are causing me angst.

Actually, I don't feel qualified to have any stress compared to what others are going through. Discombobulated might be a better word for me right now.

Thank you. Like they say..if it was a snake..



Iris L.
Posted: Sunday, February 25, 2018 12:10 AM
Joined: 12/15/2011
Posts: 18057


Hischild, the medical term for what you describe as "leakage" is encopresis.  It is related to constipation but some liquid stool seeps out around the blockage.  There are many reasons for encopresis in adults.  You already have a lot to deal with, but if you want to know more about this, you can google.  You might think about adding bulk-forming foods to cause him to have more regular bowel movements.  Or you might not.  I was a pediatrician in my working life, so I am familiar with encopresis.


Iris L.


Hischild77
Posted: Sunday, February 25, 2018 12:40 AM
Joined: 9/16/2017
Posts: 112


Iris L., thank you. I didn't know there was a medical term for it. I should have known. I do know how to help him, but his acceptance is negligible.

Sometimes I actually think he rather likes being felt sorry for, or pitied. Once, I let him go to services by himself. The church was giving fans to the needy that day. He came home with a fan and told me he mentioned to the pastor he was sitting in a hot room with a tiny fan. We have 2 air conditioners running in the summer and the use of 4 box & 2 desk fans to circulate air from room to room, 2 of which are in his room. They have offered him socks (he never wears any), shoes (he wore a pair of work boots with one sole completely falling off), shirts, gloves..  

He is driving me insane! Going anywhere with him is causing me great embarrassment. Those in my church are looking at me as the wife to care for her DH. Until he receives a diagnosis, I will keep what's going on with him (us) to myself. It's unfortunate I can't leave him home alone anymore. Before, I'd come home from the store, or wherever, to a What-the-H.ll.


Iris L.
Posted: Sunday, February 25, 2018 1:13 AM
Joined: 12/15/2011
Posts: 18057


Hischild, I see your DH doesn't have a formal diagnosis yet.  But I want you to be knowledgeable about a condition that seems applicable in your DH's case.  Many PWDs (persons with dementia) are unaware that they have dementia.  So they act as if they are fine and resist if you try to tell them different or try to change things.  You have to learn work-arounds to get things done.  You will learn the work-arounds from the other members.  Don't try to go along as you have always done, because what worked before won't work now.  This article will explain anosognosia, which is the characteristic of unawareness.  


http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf


It may be best not to mention dementia or Alzheimer's Disease to him.  Please read the other online reading material from the Caregiver's board, especially Understanding the Dementia Experience.

http://208.88.4.178/~dementia/wp-content/uploads/2014/07/Understanding-the-Dementia-Experience.pdf

 

You must get some sort of diagnosis ASAP, if you cannot leave him alone.  This is not normal.  There is a small chance that something correctible is going on. Otherwise, you need to plan for long term care, whether at home or at a facility.  You do not have to decide immediately, but given your degree of distress, it should be soon.  IMO, you should discuss this with your pastor, or someone who could be a support for you.  You can call the Helpline and ask to speak with a Care Consultant.  The number is 1-800-272-3900.  This is not something you can deal with alone; you need support!  The members here are great, but you need more.  You might search for a local support group.  Also, visiting the Chat Room in the evenings might help relieve your isolation.

 

Iris L. 

 

Hischild77
Posted: Sunday, February 25, 2018 1:47 AM
Joined: 9/16/2017
Posts: 112


Iris L., an appt has been made. No, that's not correct. An appt has been requested. If I don't hear from them on Monday morn I'll call again.

I've been overwhelmed with the advice I've read here, and elsewhere. It's been like taking a full college course in one week. I've subscibed to various posts also, even though they blow up my email. I put the main threads in a folder and refer back to them and delete the rest. Everything will become manageable with time, I'm sure, but right now it feels like I've been deposited in a foreign country or on a distant planet.

 


rodstar43
Posted: Sunday, February 25, 2018 7:49 AM
Joined: 8/29/2016
Posts: 49


BHV, how did adult day care cost an what do the call it in your aea?

Are there min hours?

 


LilySue
Posted: Sunday, February 25, 2018 11:52 AM
Joined: 8/2/2015
Posts: 130


McCott . . . I can go from being a loving and understanding wife to a raging maniac in 60 seconds. Last night and this morning the hallucinations have been huge, and I become obsessed that this is our new normal. I have always had the tendency to be anxious, and there is so darn much to worry about. I feel very caught between not knowing how I would survive without this man I've been married to for 50 years, and how I will survive with him. That's a horrible dilemma.
Kay J
Posted: Sunday, February 25, 2018 12:11 PM
Joined: 12/3/2011
Posts: 222


Thank you for posting and starting this thread. I just read through all the comments and there is so much understanding and support from everyone!  I read your original post shortly have you made it but avoided reading the ongoing comments for fear of seeing judgemental condemnation.  Thankfully that didn't happen and thankfully I came back and saw all the kind responses.
Blondie49
Posted: Sunday, February 25, 2018 12:49 PM
Joined: 2/8/2017
Posts: 447


Rodstar,

How do you get yourself back?  There is simply no time for the Caregivers.  The movie is a good idea.  Depressing but it would be an eyeopener to all the friends that have left us by the wayside.

 

 


Blondie49
Posted: Sunday, February 25, 2018 12:51 PM
Joined: 2/8/2017
Posts: 447


McCott'

It looks like from all the responses , that we are all feeling like this.  And it feels good to know that there are others who feel as we do.

We do have the right to feel this way and we have the right to let everyone know it too.

Blondie

 


mrsbob
Posted: Sunday, February 25, 2018 12:54 PM
Joined: 2/9/2017
Posts: 21


Sorry I meant to say my DH is physically very healthy. As for our Doctor she is fantastic.  Her comments are meant to make Bob feel better.  She has no idea how they make me feel.  I would never tell her when I know she is trying to be nice.

As for Medicare/Medicaid I figured it was Medicaid that she meant.  But again she was trying to be nice and help.  I wasn't about to contradict her.

You seem to be very negative and that I really don't need.  Thank you for your advise.


mrsbob
Posted: Sunday, February 25, 2018 12:57 PM
Joined: 2/9/2017
Posts: 21


I have pulled the Policy out and I will go over it in a bit.  hank you so much for your advice.  I will let you know what happens.
mrsbob
Posted: Sunday, February 25, 2018 1:00 PM
Joined: 2/9/2017
Posts: 21


Thank you.  I will look into this.  I have pulled the policy out and I will go over it in a bit.  I really would like to keep him home, but I do need help.  I can't keep doing it all alone.
mrsbob
Posted: Sunday, February 25, 2018 1:11 PM
Joined: 2/9/2017
Posts: 21


Ken, If it weren't for my faith I probably would have given up a long time ago.
Like you I mourn for the loss of our future.  We had a motor home and we were going to travel and play golf all over the USA,  Now my big excitement is church, grocery store and Doctors.  I miss the talking, sitting out on the porch with a glass of wine watching the sunset. I miss the cuddling, holding hands, watching the news and discussing it.
Just watching him do things brought me so much joy.

heathelaine
Posted: Sunday, February 25, 2018 1:11 PM
Joined: 11/14/2017
Posts: 24


I certainly can appreciate your honesty in expressing your feelings. I believe all individuals who care for someone with dementia has been to this point at least once.  I certainly have many times.  

 


mrsbob
Posted: Sunday, February 25, 2018 1:15 PM
Joined: 2/9/2017
Posts: 21


I feel my house is one big nasty smell even tho I do my best to keep it clean.  One problem is when he has to go to the bathroom for either one he pulls his diapers down BEFORE he get's there.  Can't begin to tell you how many times I have had Stanly Steamer in.
mrsbob
Posted: Sunday, February 25, 2018 1:18 PM
Joined: 2/9/2017
Posts: 21


Boy I hear you.  My continuing prayer is God give me patience.

It is so hard.  I want to be sweet to him but sometimes..............well you understand.

Carole


heathelaine
Posted: Sunday, February 25, 2018 1:19 PM
Joined: 11/14/2017
Posts: 24


Kellly: I swear I was married to his twin brother!  A great deal of what you said, I too have been through.  I take care of my Ex.  Sometimes I think, Why am I here?  I divorced this man years ago!!.  There is something about me that I just can't abandon him now.. Slave. 

 


Iris L.
Posted: Sunday, February 25, 2018 1:40 PM
Joined: 12/15/2011
Posts: 18057


Hischild77 wrote:

Iris L., an appt has been made. No, that's not correct. An appt has been requested. If I don't hear from them on Monday morn I'll call again.

 

Hischild, it seems like everything about your life will have to change, even the way you visit the doctor.  There are many threads about how to approach a medical visit when the suspected PWD has anosognosia and is not interested in a medical evaluation.   You will have to write up notes about what you observe and your questions, and make it available to the doctor before the appt.  Have in mind what conclusion or solution you are seeking.  Since you are beginning the evaluation, there are blood and other tests that can be done by the PCP; then you will need a referral to a neurologist.  All of this takes time and a lot of effort.  Please read information on the diagnostic process.  Yes, there is a lot to know and remember.  There is little knowledge about the dementias in the outside world.  The members here are experts.  You can't find better advice than here.  Since there is a lot  to know about visiting the doctor, you might want to start your own thread.



Iris L.

Mzzz
Posted: Sunday, February 25, 2018 4:37 PM
Joined: 6/24/2016
Posts: 18


Does the Alz Connected message board forum have the feature where you can automatically be taken to the first unread message in a thread, instead of to the beginning, and then have to scroll through all that you've already read to find where the newe replies are? If so, could somebody please direct me to where the setting is.  Thank you.
rodstar43
Posted: Sunday, February 25, 2018 8:06 PM
Joined: 8/29/2016
Posts: 49


Blonde, as I think about it some more, you never get back to what you were.  You MUST become a stronger new you.

"The Caretakers" must be a comedy. Thought about that too, normal people would not believe it all.  But, a comedy with a message.

It would be hard for me to watch as humor has been lost somewhere!


extex
Posted: Sunday, February 25, 2018 8:07 PM
Joined: 8/23/2014
Posts: 627


It has no such feature as far as I have been able to determine but it sure would be nice.  It will take you to the last page of a multi page thread but not to the last message.  That should be a pretty easy feature to incorporate in their next software update.  Maybe suggest to admin.
Iris L.
Posted: Sunday, February 25, 2018 8:18 PM
Joined: 12/15/2011
Posts: 18057


click on the purple button after the date and time of each thread--this will take you to the last post of the page.  If there are more than one page, you will have to click on the last page.
Example:
Sunday, February 25, 2018 8:07 PM 

rodstar43
Posted: Sunday, February 25, 2018 8:25 PM
Joined: 8/29/2016
Posts: 49


Hi Mrsbob, I understand lonely. 55 years of marriage, 9 yrs of AD and lying next to her and being in the same room with here does NOT take away the lonelinesss. Living in a ALF with her doesnt help either. Her cancer , hospice doesnn' either. If I wew not here my son would just have to pay. This in between every thing is lonely. Just go day by day as long as I can. Some teenage marriages last too long. Oh, forgot seizures.

 


 
× Close Menu