# My dad ate my soap



## Dana89 (Jul 4, 2016)

Normally this would be a funny story, I could tell everyone how my father has a terrible sweet tooth and mistook my Dragon's Blood soap for a batch of brownies but it shows how quickly his Lewy Body Dementia is progressing. My soap is on curing racks in the guest bedroom.
I layed down to take a nap and woke to get his dinner and he was choking and spitting out my soap.
Lesson learned and up goes another lock. I already have the soap supply room with the lye and fragrance oils under lock and key.
One month ago he would have known, he would have remembered that I make soap.
I get so frustrated with this disease and yes even him, which leads to me feeling guilty.
Ok I just needed to vent, thanks.


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## cmzaha (Jul 4, 2016)

I know exactly what you are going through and it is a hateful diesease. My FIL was diagnosed at 56 and lived 13 years with it. My step-dad has been diagnosed with Alzheimer and it is progressing quite fast. Although I knew 2 yrs ago he was showing symptoms. Sad to say, but at least age is on his side at 90 yrs. This is why we are pretty stuck and cannot go out of town


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## TeresaT (Jul 4, 2016)

Oh, gosh, Dana!  I am so sorry.


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## Dana89 (Jul 4, 2016)

Thanks Theresa, it is a difficult time indeed, watching my father go from a strong man to a toddler like exsistance.


> I know exactly what you are going through and it is a hateful diesease. My FIL was diagnosed at 56 and lived 13 years with it. My step-dad has been diagnosed with Alzheimer and it is progressing quite fast. Although I knew 2 yrs ago he was showing symptoms. Sad to say, but at least age is on his side at 90 yrs. This is why we are pretty stuck and cannot go out of town


CMZAHA-Yes exactly. he has been here almost 3 months and I have been away from him for 4 hours. He used to be such a kind and loving man, now paranoia and anger have taken their place. He forgets about 2 times a week that he moved in here and accuses my husband and I of stealing his old house, which he sold when he was diognosed, I cannot believe how fast its moving. I was his PeeWee, his Peanut and how could he think I would steal from him when we had 7 years left to pay off our home but took on a 30 year mortgage to get a larger home so he can stay out of a nursing home.
Did your FIL go through a drastic personality change?


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## Arimara (Jul 4, 2016)

There's nothing wrong with feeling frustrated from being your parent's caregiver. It's how you go about dealing with that frustration that should always loom in one's head. A little over month ago, my mom had stopped eating thanks to her cancer. If she had not been admitted to the hospital when she was, We would be in her birth state now. But during the periods she had not been eating, my sister and I were trying to get her to eat and drink anything. On top of that, my grandmother kept telling us to make her drink milkshakes and what not for caloric intake. She even sent us over ice cream to make the shakes (a brand none of us would touch with a 60 ft pole). I'm home more than my sis is so making sure my mom ate something got to be a huge challenge to the point I wound up crying about it. If you asked the woman now, mom has no recollection of being that difficult. She's back to her old self minus the energy to go for the walks she used to do.

I'm not trying to through a sob story or hijack the thread. I just want to remind you that you're doing the best you can and though I can only imagine that it hurts like sin, I'm sure your dad would appreciate his daughter not giving up on him. I've seen this dementia with my grandpa and I know it's not a cake walk. I can tell you that your actions scream "I love my dad" and I don't think he could be in better hands elsewhere.


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## snappyllama (Jul 4, 2016)

Hun, I feel for you. My mother had Alzheimer's along with a bunch of other problems. Watching her lose herself was the worst thing imaginable... 

You might consider locks on the food pantry and fridge also or setting up an alarm that will alert you when he leaves his room at night. 

My mom had a 'sneaky phase' where she would go into the kitchen in the middle of the night, gorge herself on random things like cartons of butter, become sick and go back to eating. Other things about the 'sneaky phase': refusing to bathe and hiding the need to bathe, hiding things like purses and keys, taking stuff apart and blaming kids/dog for it, not wanting to get fully dressed. It was like dealing with young child. The only upside to it was that we found that she could be made happy like a young child. Distraction worked a lot better than confrontation at getting her to do things (like bathe). Getting her to think that she had a choice helped too. "Can you help me pick out the towel? Which color do you like better?" And yes, it was horrible to manipulate my very-smart-coulda-won-on-jeopardy mom into taking a shower like she was a toddler.  But it helped keep her happy. That was the goal: Keep Mom happy for as long as we can. The sneaky phase was actually her happiest since she found out was sick. Oh jeez, I'm going to cry now.

Feel free to vent away and get some help if you can. <hugs>


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## reinbeau (Jul 4, 2016)

Bless all of you for your care giving.  I can only imagine.  So far my mother, at 82, is independent and seems to be ok.  None of us have a guarantte, though.....


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## earlene (Jul 4, 2016)

*Dana*, it is very hard on a child to see a parent become something so different from the way we knew them in our youth.  Is he eligible for any services that would provide you with a little respite care?  My husband rarely talked about how hard it was for him to see his Dad change the way Alzheimer's changed him, from a happy-go-lucky, always something good to say about everyone, daily reader, daily driver, snow-shoveling and lawn mowing house proud kind of guy to a man who could not remember how to start the lawn mower, had to have his drivers license revoked, couldn't remember how to turn on the water in the shower and eventually did not recognize his sons or even his wife.  The loss of his drivers license was very hard on my FIL, but I think losing his mind was much harder on him even though some of the time he didn't really know what what going on, but he knew something was wrong.  It was very hard on my husband and his brother, and of course, MIL.

FIL was eligible for some services through the county (or the state via the county) and as a veteran of the US Army, so he had a helper come in twice a week to do things for him and so MIL could go out if she wanted.  This way they were able to stay in their home longer.  But eventually he could no longer help my MIL, who is disabled and they moved into a 'home' (Assisted living) and sold their home.  But he was still covered for the caregiver.  She continued to come in twice a week to do laundry, go grocery shopping and take him for walks, etc.

If you can get that kind of help for him, it would really help you find at least a little time for yourself even if it only means going for a drive away from the house once in awhile.  I totally empathize with you and hope your father doesn't eat any more soap or anything else that will cause him difficulty.


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## Dana89 (Jul 4, 2016)

Thanks all for letting me vent. I know it must be terrifying to wake up and have no clue where you are or how you got there. I knew this would happen and that is why I wanted him to see the faces of the people that love him everyday. I just pray that it does not become to much for me and have to make decision of putting him in a nursing home.

@Earlene We have talked with a hospice agency, he also has CHF and COPD so they think he may qualify for hospice.


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## KristaY (Jul 4, 2016)

I know how hard this situation is Dana so I'm sending prayers and positive thoughts your way.


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## Susie (Jul 5, 2016)

Speaking as both a home health and a hospice nurse who has seen this play out through many, many families and over many years, I applaud you wanting to take care of him.  However, there may become a time where your home is not the best place for him.  He may begin wandering, or become paranoid, or violent.  If this is the case, you may have to make the hardest decision of your life to place him in a safer environment where he can have 24 hour monitoring and care.  If/when this happens, you need to keep reminding yourself that loving him means doing what is best for him.  

This is not a selfish decision.  It is the selfless one, even though you feel like you are betraying him.  You are not.  You can, and should, go see him every day in his new home to be sure (and ensure) that he is getting the care he needs, but he will truly be better off in a more secure environment than your home provides.


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## dixiedragon (Jul 5, 2016)

Hugs to all of you! My mom cared for her grandma in the last 18 months of her life. We were fortunate in that by the time she lost lucidity, she was also mostly bedridden. My aunt is currently facing this with her husband - he is barely 60 and has been a very physically active man. He is in great physical health, but his brain is shrinking. He walked 3 miles to the grocery store with no shoes.


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## Guspuppy (Jul 5, 2016)

Oh Dana I know that frustration and guilty feeling! Even now people sometimes praise me for taking care of my dad (Alzheimer's) 24/7 for three years and I want to say to them, "I do NOT deserve any praise, if you only knew how I yelled at him sometimes when he didn't know who I was or wouldn't take a shower or stepped in the dinner rolls I had raising in front of the fireplace for Thanksgiving dinner or....." Yet I did the best I could and am SO GLAD I did it. I would not trade those three years with him for anything now! He died from a stomach cancer we didn't catch (due to the Alzheimer's) until four days before his death.


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## Dana89 (Jul 7, 2016)

Well I am very conflicted. I do not anyone to have to go through this,yet it feels nice to know that I am not alone.

@Susie- He have been paranoid for a while, my DH is suspect to him, everything is is fault. He paces all day, his hallucinations are constant, he can not longer tie his shoes, use the phone, or the remote control. When he isn't pacing and he sits down and just stares at nothing. He can dress himself but he is so unsteady on his feet I do have to help him bathe. Along with his COPD and CHF do you think he would qualify for hospice?

@Guspuppy-I found myself nodding in agreement with you about how difficult it is not to get angry when I have been accused of trying to kill him and I really have given up my life to take care of him, it is so frustrating, then I get angry for getting angry.
This is happening so fast, last october he started having mild memory problems and less than a year later he is in terrible shape.


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## Susie (Jul 7, 2016)

Dana89 said:


> Well I am very conflicted. I do not anyone to have to go through this,yet it feels nice to know that I am not alone.
> 
> @Susie- He have been paranoid for a while, my DH is suspect to him, everything is is fault. He paces all day, his hallucinations are constant, he can not longer tie his shoes, use the phone, or the remote control. When he isn't pacing and he sits down and just stares at nothing. He can dress himself but he is so unsteady on his feet I do have to help him bathe. Along with his COPD and CHF do you think he would qualify for hospice?
> 
> ...



He very well could.  I am going to have to be very straightforward here, so please forgive me.  You need a doctor that is able to truly say that he would not be surprised if your dad passed in 6 months or less.  That is the rule set down by Medicare and the insurance companies.  

But what are you expecting hospice to do?  They will be an intermittent assistance, and can provide up to 2 weeks respite care (in a local nursing home), but mostly they come and go.  They do not move in to take care of him 24/7.  They can go see him if he is admitted to a nursing home to provide an extra layer of care.  

You need to contact the doctor and talk to him seriously about the prognosis facing you.  You could be facing up to 8-9 years of worsening symptoms, including sundowning, where suddenly he is awake all night and wandering.  And the worst problem is that the medications for one set of symptoms makes the other symptoms worse!


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## Cindy2428 (Jul 7, 2016)

Dana - Susie is correct. His or another doctor will need to make him hospice "eligible" by stating that he is terminal - 6 months or less. That's not to say that if he does not pass in 6 months, services stop. Doctors are not G-O-D. The good things hospice can provide - they will pay for all of his medications that make him comfortable; pain meds, psychotropics.  The agency providing services may also insist he have a DNR in place, (mine did), as well as educate you to the fact that he is no longer eligible for emergency services - ER trips, etc. Hospice is dying with dignity, not life prolonging. Your Dad will be eligible for a home health aide since he needs assistance with bathing. The aide can also be given more time to assist with his needs - make his bed, clean his space, make him a simple meal. The evaluating nurse will determine and get MD approval for the time allowed. If you receive 2 hrs 2x a week, this may give you a little respite to go out shopping, get a haircut, take some time for you. Also don't be afraid to ask for a social work consult - you need someone to talk to as well.

Personally and professionally I was there as well. Unfortunately I couldn't keep my Dad at home; there wasn't any way he would have his daughter tell him what he could and couldn't do. Fortunately he and Mom, (also gone) had saved their money and he could afford an assisted living apartment in a locked Alzheimer's unit. My thoughts and prayers are with you Dana. The 3rd anniversary of my Dad's passing is very close and it brings all those memories back - sadness, pain and relief/guilt that it was finally over. Stay strong - virtual hug, Cindy


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## dibbles (Jul 7, 2016)

I am so sorry you are going through this Dana, and also all the others who have posted similar circumstances. My mom went from living in her own home, driving, managing meds, etc. to a nursing home in the span of 3 months. She had physical problems, but the mental decline was so rapid it made my head spin. Her physical problems made it impossible for her to be here with me. The mental decline - we still don't know. It wasn't alzheimers, dementia or a stroke. Going through losing my dad to cancer was easier in many ways - at least I could understand the process.

This is a difficult time for you. I hope you find a way to get a little time for yourself. And you also shouldn't have guilt about your feelings. Your feelings are normal. Taking care of your dad the way you are shows how you truly feel.


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## PrairieLights (Jul 7, 2016)

:cry::cry:
I clicked on this to laugh, but instead I am teary. I understand. I really do. I took care of my grandmother until she died - a once intelligent, vibrant leader ahead of her time - and watched her life stripped away. I am so sorry. *HUGS*
*HUGS* *HUGS*


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## Susie (Jul 7, 2016)

Now that I have more time to elaborate on my previous post, let me do so.  

Yes, the referring MD needs to say that he would not be surprised if your dad passed in 6 months or less.  No, he is not God.  No one expects him to be, not the insurance, not Medicare.  And the doctor is not saying he will be gone in 6 months or less, just that he would not be surprised.  See the difference?  I had a patient on hospice for 2.5 years with Medicare never blinking an eye about it.  She was not receiving life prolonging treatment, she had a terminal diagnosis, she still qualified.  Period.  (I left that job, so I don't know how much longer she lived, but she was still tending her own garden when I left.)

What hospice can/must provide:

All medications related to the admitting diagnosis.  That does not mean they will pay for all meds.  Just the ones that pertain to why he is on hospice.

Medical equipment deemed necessary due to the admitting diagnosis.  Again, not all medical equipment.  But if he needs thing X only because of his diagnosis that got him on hospice, then they are paid to provide that.  Every agency has different definitions here, so ask before assuming.

Pastoral care(chaplain).  If you have your own pastor that is taking care of those needs, he or she will check in with them to see if the agency needs to provide any additional care or not.  You can opt out if you desire.

Social worker.  One must be made available.  When I worked hospice, they had to see the patient or family once every two weeks, this may have changed.

Home Health Aide.  Bathing and personal needs.  Change the sheets, bath, dressing, etc.  They are not maids, they are aides.  They do not clean house.  You can, however, rightfully expect them to not leave the bathroom a wreck when they get done, put the towels and sheets in the washer, and clean the patient's immediate area.  You can, as mentioned above, _possibly_ work out with them and the agency if you need some short term respite care.  Time to go to the grocery store, etc.  The agency may instead have volunteers to help with that.  ASK.

Nursing care.  This could be an LPN/LVN or an RN.  If you have aides and LPNs, you will have intermittent "supervisory" visits from an RN.  It is in the regulations.  The nurse should, at the very least, teach you and the family symptom management and anything else that pertains to his diagnosis.  They should also be monitoring for symptoms related to the diagnosis and interacting with the MD on how to best manage them.  You must be very, very honest with them about what goes on when they are not there.  They can't help if they don't know.

The hospice can also provide up to two weeks respite care where you can go on vacation, and your dad gets placed into a nursing home for the duration. 

They can also see your dad if he is in a nursing home to provide an extra layer of care.  Even a locked unit nursing home. 

Some hospices even have in-patient facilities where people move into to receive hospice care.

What they hospice can't provide:  24/7 care in your home.

I also understand this from a personal perspective.  My mom had hospice before she died.  Although she had lung cancer, she had some sort of dementia going on.  We are not sure if she had brain metastasis or something else going on.  She got very difficult to deal with.  I worked for a very small agency where I was one of two nurses, so I opted to use a different agency.  It was a very wise decision, because I could either be the daughter or the nurse, not both.  I needed someone objective dealing with her medical side.


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## Steve85569 (Jul 7, 2016)

Dana,
Just saw this post.
My father passed from complication of Alzheimer's. I really really feel for what you are going through. I know from my own experience how difficult it is to even try and remember that he is quite ill and not doing some of the stuff just to " get to you". You need to find a way to be able to get a "day off". Some long term care facilities offer "respite care". Finding one that will take a dementia/ Alzheimer's patient can be a challenge but it's worth it.

What Susie said is spot on. We had in home care for Dad for almost 3 years. This thing is eating him from the inside out and no one knows how to stop it as yet. It's not your fault nor is it his.

Prayers will be going out for you and your father.

Steve


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## DeeAnna (Jul 7, 2016)

Thanks for the info, Susie. I am following with sad interest, because my mother is gradually declining after having several strokes a little over a year ago. So far Mom is still living at home with daily assistance -- but I know her health is inevitably going to go downhill. 

To Dana -- my heart goes out to you. It's a sad and difficult road you're traveling.....


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## Susie (Jul 7, 2016)

My heart goes out to all of you.  Truly.  I have been through that both on personal and professional levels.  It really is a tough thing to go through, no matter what the disease process is.


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## Rowan (Jul 7, 2016)

My heart goes out to all of you who are going through such a difficult and heart rending time at the moment. 

My Grandad had COPD and possibly dementia. It was never diagnosed.  We looked after him at his home at first and when he became more unwell he moved into ours. It was so difficult seeing him go downhill so fast mentally, when previously he'd been so strong. 

As young adults we came to love our Grandad in a different way than we had before. I still treasure the memory of his face lighting up every time he saw the kitten. He told us he hated that "bloody cat", in his Irish accent (he would never swear in front of us before). The kitten adored him, he would give her little treats when we weren't watching and she would sleep on his lap or on his slippers(whilst he was still wearing them!). As soon as we opened his bedroom door she used to run in and whizz around his bedroom at a million miles an hour and he would say "look at her, she's like a bloody bullet". 

It was hard looking after him though, mostly 24 hours a day care, including nursing him through multiple infections.  He had to have a commode at night but would then try and empty it. We often caught him just in time from chucking it in one of the bedrooms! The nighttime wandering was the worst.  I remember we felt so guilty when we had to put him into nursing care, but he was a danger to himself and us. We literally couldn't stay awake all night every night, although we tried!  He did things like trying to light cigarettes and then would leave the gas on! We're not even sure how he found the cigarettes! When I look back I realise that for us and my Grandad, it was safer for him to go into care, even though it hurt at the time and we felt we had failed. We were beyond exhausted. 

With an older head, I realise that we didn't fail. We did everything we possibly could and more and for as long as we could.  His and our safety were paramount. I'm so glad we had that time with him. Just remember that to be safe looking after them, you have to look after yourself too!

Thinking and praying for you Dana and everyone else who is going through this currently. My hugs may be virtual but it doesn't make them less real!


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## Steve85569 (Jul 7, 2016)

There is a book "The 36 hour day".
The Dementia / Alzheimer's patient looses the internal clock first resulting in an ever shifting biological day shift/ night shift thing. It's almost impossible to live with ( unless you are the patient).


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## Dana89 (Jul 7, 2016)

Susie said:


> Now that I have more time to elaborate on my previous post, let me do so.
> 
> Yes, the referring MD needs to say that he would not be surprised if your dad passed in 6 months or less.  No, he is not God.  No one expects him to be, not the insurance, not Medicare.  And the doctor is not saying he will be gone in 6 months or less, just that he would not be surprised.  See the difference?  I had a patient on hospice for 2.5 years with Medicare never blinking an eye about it.  She was not receiving life prolonging treatment, she had a terminal diagnosis, she still qualified.  Period.  (I left that job, so I don't know how much longer she lived, but she was still tending her own garden when I
> 
> ...



I did work for Hospice as a nursing asst. for many years, I do not feel I need an aide right now. What I am having a huge problem with is getting him to go to the doctor and when he does go to the doctor they suggest another doctor, his neurologist said he needs a phsyciatrist for the klonopin, and seraquil he is taking. The Klonopin helps when he is pacing or agitated, the seraquil helped his hallucinations for a month and he has had 3 raises in the amount because  guess he gets used to them and it stops working. His heart doctor has asked if we want to continue treatment, he needs more stints or possible open heart surgery or if he just wants too continue with his blood pressure meds. He said anasthesia could cause rapid mental deterioration that he probably will not recover from. He does not have a living will, so it is up too my siblings and I to decide if we want a mere shell of what he used to be with a good heart or for him to more likely pass from CHF. His CHF is in what he calls the middle stage, he said he would be ok for a couple of years probably, you know they cannot say for sure.
I would like a nurse to check on him twice a week, so I don,t have to google what is going on with him.
Uhg, I am really sorry guys, I didn't mean for this thread too be so long and to go on and on, it is happening so fast, thanks for all your well wishes and everyone that is going through this you are in my thoughts. 
Everyone that is reading this, please get a living will so your loved ones will not have to be tormented over medical decisions they may have to make on your behalf.


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## Susie (Jul 7, 2016)

I made a living will while I was in nursing school.  I did not want to happen to me what was happening to some of my patients.  

Folks, you can download a living will from the internet.  You only need two people not related to you (also not going to inherit from you) to witness it.  Then give your doctor a copy, and keep a copy in an easily accessed place.  It would help if you also named someone to have Durable Power of Attorney for Healthcare (to make healthcare decisions for you when you are unable to make decisions for yourself), which is also downloadable from the internet, and same rules apply for witnesses.

Dana, I am glad you posted this thread.  Really!  If nothing else, it lets us get the message about living wills and DPOAH's out there.  That is super helpful!  I think it has also helped folks know that they are not alone, and that while their situation is difficult, it is not hopeless.


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## earlene (Jul 7, 2016)

*Dana*, as my FIL's dementia advanced, it became necessary for his own welfare, to take him to the doctor without telling him where we were taking him. The dementia interferes with his cognitive ability and he often cannot think or respond rationally or in his own best interest.  It was one of the hardest thing for MIL to accept.  She felt like everyone was telling her to lie to her husband or to trick him, when in reality the purpose was to make him feel more comfortable in the life he was living at the moment. 

We grew up learning to face reality head-on and be truthful and confront people when they are wrong; our parents taught us that. But now we have to learn to 'play along', ignore misspoken or misremembered things by not correcting them, by going along with it or by changing the subject (distraction) rather than arguing and trying to convince them of whatever it is that they remember incorrectly.  That was another thing MIL had a lot of difficulty with.  I think it is harder when you live with a person 24 hours a day and the changes sneak up on you. When it's time to change your approach to the person, it's a hard thing to do after so many years of dealing with them in one way.  I am pretty sure that's why MIL had such a hard time accepting that changing the way she responded to her husband was the right way to deal with him.  

I don't know where you live, and what services are available to your father, but hospice is not the only game in town in many places.  Sometimes the person qualifies for more than one form of service.  We live in Illinois and my FIL qualified for services covered by the state, administered by the county.  But he also qualified for assistance under his military service.  Did your FIL serve in the military?  If he did, then he very likely qualifies for some services by virtue of his military service.  They paid for FIL's Alzheimers medication 100%.  And the veteran does not even have to have served during active wartime.  They are still eligible for this service.


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## earlene (Jul 7, 2016)

Susie said:


> I made a living will while I was in nursing school.  I did not want to happen to me what was happening to some of my patients.
> 
> Folks, you can download a living will from the internet.  You only need two people not related to you (also not going to inherit from you) to witness it.  Then give your doctor a copy, and keep a copy in an easily accessed place.  It would help if you also named someone to have Durable Power of Attorney for Healthcare (to make healthcare decisions for you when you are unable to make decisions for yourself), which is also downloadable from the internet, and same rules apply for witnesses.
> 
> Dana, I am glad you posted this thread.  Really!  If nothing else, it lets us get the message about living wills and DPOAH's out there.  That is super helpful!  I think it has also helped folks know that they are not alone, and that while their situation is difficult, it is not hopeless.



Actually you should make several copies if you have several children, and give one to EACH of them.  Discuss it with them even though they will not want to discuss it.  My parents both did this and we did NOT want to discuss it I can assure you.  But not only did each one of us have a copy, so did their attorney.  Of course so did the hospital and their doctors.

When my father had his final stroke, the hospital had mis-filed the document and were treating him as though he did not have a DNR on file.  When his wife and I were visiting the next morning and the nurse was telling us that he kept pulling his NG tube out and that's why his wrists were tied to the bed, I said to my dad's wife, what does his Durable Power of Attorney for Health Care say?  I'm pretty sure it says he doesn't want a feeding tube (etc.)  She couldn't remember for sure.  So I asked the nurse if they had the DPHC on file and she checked his chart again and returned to say it was not on file.  So I called my brother and asked him to bring his copy to the hospital.  It happens.  Things get misfiled all the time, even in hospitals.

So talk it over with your children and significant others and make sure they all understand what your wishes are should you be hospitalized with a terminal illness and are no longer able to talk or communicate with the medical staff yourself.


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## Pepsi Girl (Jul 8, 2016)

Dana my prayers for you and your Dad.  I too watched as my Dad, whom I thought was the greatest Dad ever, disappear because of dementia.  I was fortunate, Dad actually became sweeter sweeter.  But it was still very difficult.  One thing I did that helped me was laughing.  Seriously, when he would do crazy things I would make a conscience effort to laugh about it.  Not that I could always but when I could it always helped.  
Praying for peace and joy to your mind. Strength to you body.


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## TDS (Jul 15, 2016)

I'm so sorry you have to go through this. My heartfelt prayers are with all that have to go through this with their parents.


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## Dana89 (Dec 12, 2016)

Hello all, I am getting ready to back into soapmaking but I thought I write the final chapter in this thread and thank everyone for their support.
My entire family got together and agreed not to put him through open heart surgery, which is what his cardioligist said he would need after I finally got him a Cath lab test, which took much sedation before and during to even get that done.
 We came to that decision in late August. I was still taking care of him on my own and looking into a Hospice company, when in late September during one of his few lucid moments he looked at me and and said "Peanut, I think mother is calling me home, I feel her presence around me all the time".
This was not one of his rambling, frightening delusions or hallcinations. He was serious and calm, he called me Peanut again.
I asked him how he felt about that and he said "I am ready". Thankfully this took away my fear of making the wrong decision about his heart surgery.
He crawled into bed and did not get up the next morning which was unusual. He said he was just tired and wanted to sleep more. This went on for several hours and when my husband got home I asked him to help me get him up. When I got him up I noticed his face was drooping to one side and he was dry, he had not urinated in over 12 hours. So I called an ambulance.
At the hospital he was diognosed with malnutrition!? He weighed 210 ans ate well. This was on a Friday, When he got there in the E.R they had to catheterise him to get his urine which was rusty red, but they did not leave it in afterwards.
The next two days they were pumping him full of fluids, I would stay all day and he still did not urinate, they kept telling me he was urinating at night. He was combative, he could not walk, they did not even check him for a stroke!
They said it was just common because he had muscle atrophy, well I new that would happen but you do not go from walking fairly good one night and not all the next day.
They gave me a release date on Monday. I called the Hospice company Monday morning and told them what had happened, what the hospital said and they were at the hospital within 30 minutes with their own Doctor who did a MRI and said he did have a frontal lobe stroke and was in acute kidney failure.
They took over, and Thank God for them. They made my dad comfortable, catheterised him and moved him into their Hospice facility which was lovely. Once dad was comfortable he never woke again and passed peacefully the next day.
The only thing I regret is not calling them sooner. I am in a way relieved dad did not die from Dementia, but I was also in shock at how quickly everything happened. 6 months was how long he had to deal with Lewy Body dementia (once it got bad) and he was always in a frightened state from the things he was seeing or thinking.
Had Hospice been in the picture he would not have had to go through that ordeal at that terrible hospital which was dismissive of every concern I had.
So anyone that is going through this alone, please do not wait like I did, get an evaluation from a hospice company as soon as your Doctor writes a prescription for it because you may not know everything that is going on. My dad was on SS, and Hospice did not charge a dime. I am still getting hospital bills rolling in. He passed away Sept 29th. I am done moping, I can still grieve but no more moping around in my sweatpants.
I had my husband get me some lye today and I am at least going to start soaping again. I missed you all and am looking forward to catching up with all of you!


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## kchaystack (Dec 12, 2016)

I am glad your father was able to pass in a peaceful way, and that you were able to find peace with it as well.

Hospices are amazing things.  We had one working with my grandfather when he passed in 2006.


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## shunt2011 (Dec 12, 2016)

Hospice is amazing. We used one for my mother in law. Glad he was able to have some comfort. Sorry for your loss.


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## Seawolfe (Dec 12, 2016)

Oh Im sorry for your loss, but that Hospice does sound amazing, bless them.

Take some time for *you* now, I am absolutely sure that you need it.

Regarding billing, take your time to figure out what is your responsibility, and what should be charged against the estate (if any). Many bills die with the owner. When my mother died and I was barely 21, an incredibly kind billing agent told me that I could tell her to stop calling me - that most of the bills I was getting calls about were not my problem.


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## DeeAnna (Dec 12, 2016)

It took a lot of time, energy, determination, courage, and love for you to care for your dad like you did. I am glad you gave yourself time to grieve, and I'm even more glad you are now finding some peace.


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## Dahila (Dec 12, 2016)

I am so sorry for your loss Dana


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## Dana89 (Dec 12, 2016)

Thanks so much for all your condolences. I feel 73 was too young for him to go, but we are never ready to let go of the people we hold dear to us. I feel in a way that it was better that he passed from a stroke than years of Dementia.
My heart goes out to all of you going through this right now.


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## CaraBou (Dec 12, 2016)

Dana, so sorry you will no longer see your dad, but I'm glad for all of you that he passed peacefully, leaving the torturing dementia behind. You and husband did such wonderful things for him --no doubt he'd be proud.  

I'm glad to see you back on the forum again and am looking forward to seeing your beautiful creations.


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## Arimara (Dec 12, 2016)

*ehugs* You did everything you could and gave him what every parent could want in time of need. I'm sorry for your loss and I thank you for sharing about your dad. I hope you feel better and happy soaping.


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## Susie (Dec 12, 2016)

I am so sorry for your loss, but I am glad it was peaceful.  Take time to take care of you.  

Do what Seawolfe said.  Most of those medical bills will go to be paid by the estate.  If the estate is insolvent, someone can file what is essentially bankruptcy on it without it affecting your credit rating.


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## Guspuppy (Dec 12, 2016)

Your whole story about your dad is so familiar to me. My dad had Alzheimer's, I took care of him for three years before he became ill and went into a nursing home. Within a month he had died from stomach cancer, which we did not even know he had until 4 days before his death. He too went through some 'torture' those last few days at the hospital before we knew what was wrong, and when he was made comfortable with hospice my brother and I had the privilege of seeing him die a peaceful death. He was 74. 

My heart goes out to you in this time of grief but I am glad your father's suffering and yours (and your family's) is over. Hospice is a wonderful thing.


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## dibbles (Dec 12, 2016)

Dana, I am so sorry for your loss. You received an incredible gift with the lucid conversation he had with you, and you absolutely knew he was ready and at peace. Hospice care is remarkable, not only for the patient, but also for the family. It seems like you are now in a place where you can find some peace to help ease the grief. This isn't an easy process, remember to take care of yourself. 

Also, it will be nice to have you back among us.


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## BeesKnees (Dec 13, 2016)

Dana, I'm so sorry for your loss and yet thankful you were able to share that moment of your dad being lucid and ready at the end to give you peace.  What an incredible, incredibly reassuring moment to share with your father before he passed.


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## reinbeau (Dec 14, 2016)

I am so sorry for your loss, and your father's ordeal.  Hospice is wonderful, so caring.  He felt safe finally so he could let go.  73 is too young, but the torment he dealt with.....a friend of mine has a father in hospice now with louis body dementia, he is a youngish man also. It's a tough disease for all.....{{{hugs}}}


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## ibct1969 (Dec 20, 2016)

I can't say much else that already hasn't been said by some lovely people on here- they are all my sentiments exactly.  Just wanted you to know that your story touched my heart and that I'm praying for strength and peace for you.


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## earlene (Dec 20, 2016)

I hope you are able to think of your Father and Mother reunited and happily watching over you.


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## lenarenee (Dec 21, 2016)

Dana, I am sorry for your loss. Please take care of yourself.


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## jules92207 (Dec 21, 2016)

My heart goes out to you and your family during your healing process, he was lucky to have you looking after him. ❤


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## singingjeanie (Dec 23, 2016)

Hugs my dear. So sorry to hear about your dad. I have relatives with the same problem and it is so hard to see them like that. Take gentle care.


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