My dad ate my soap

Discussion in 'General Chat' started by Dana89, Jul 5, 2016.

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  1. Jul 5, 2016 #1

    Dana89

    Dana89

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    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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  2. Jul 5, 2016 #2

    cmzaha

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    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
     
  3. Jul 5, 2016 #3

    TeresaT

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    Oh, gosh, Dana! I am so sorry.
     
  4. Jul 5, 2016 #4

    Dana89

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    Thanks Theresa, it is a difficult time indeed, watching my father go from a strong man to a toddler like exsistance.
    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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  5. Jul 5, 2016 #5

    Arimara

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    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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  6. Jul 5, 2016 #6

    snappyllama

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    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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  7. Jul 5, 2016 #7

    reinbeau

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    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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  8. Jul 5, 2016 #8

    earlene

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    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.
     
  9. Jul 5, 2016 #9

    Dana89

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    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.
     
    Last edited: Jul 5, 2016
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  10. Jul 5, 2016 #10

    KristaY

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    I know how hard this situation is Dana so I'm sending prayers and positive thoughts your way.
     
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  11. Jul 5, 2016 #11

    Susie

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    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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  12. Jul 5, 2016 #12

    dixiedragon

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    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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  13. Jul 5, 2016 #13

    Guspuppy

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    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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  14. Jul 7, 2016 #14

    Dana89

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    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.
     
  15. Jul 7, 2016 #15

    Susie

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    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!
     
    Last edited: Jul 7, 2016
  16. Jul 7, 2016 #16

    Cindy2428

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    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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  17. Jul 7, 2016 #17

    dibbles

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    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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  18. Jul 7, 2016 #18

    PrairieLights

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    :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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  19. Jul 7, 2016 #19

    Susie

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    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.
     
    Last edited: Jul 7, 2016
  20. Jul 7, 2016 #20

    Steve85569

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    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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