My dad ate my soap

[DeeAnna]

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.....

 

[Susie]

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.

 

[Rowan]

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!

 

[Steve85569]

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).

 

[Dana89]

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

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.

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.

 

[Susie]

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.

 

[earlene]

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.

 

[earlene]

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.

 

[Pepsi Girl]

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.

 

[TDS]

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.

 

[Dana89]

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!

 

[kchaystack]

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.

 

[shunt2011]

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

 

[Seawolfe]

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.

 

[DeeAnna]

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.

 

[Dahila]

I am so sorry for your loss Dana

 

[Dana89]

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.

 

[CaraBou]

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.

 

[Arimara]

*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.

 

[Susie]

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.