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Caring for elderly parent in your home. Advice needed!


Cindy in FL.
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I am sorry that this is so long and disjointed!

 

My dad was diagnosed with prostate cancer in 2001. Not sure of the actual stage, but it was already in the lymph nodes two levels out from the prostate. He did very well with treatment for many years, but really declined last year. He lived alone, 15 minutes from us, and his apartment was really gross. I won't go into details!

 

At the beginning of November he decided that he would move in with us in two weeks. Before the move took place, he fell at his house and hit a mop bucket resulting in a 7 inch long, 1 1/2 inches deep gash on his leg. While my dh was at the ER with dad, I marshaled the troops and we moved his bed and other necessary items to our house.

 

I did not bring his car over right away because he was not able to drive at that time. He also said he wanted to be involved in cleaning out his apartment, but it was so cluttered (think Hoarders) and filthy that it was not feasible to take him back there. We couldn't afford to keep paying rent while we took months to clean it out, and neither could he (one of the reasons he needed to move in with us). The bulk of his b longings are in a storage unit.

 

He got a bit depressed/sad/angry because of the way it all went down, which I understand completely. He loves music, and would play it at full volume at his apartment. I don't know how he got away with that! I am very sensitive to noise, kids are doing school work, etc., so we invested in a very good set of wireless headphones so that he could listen to music and watch tv at the volume he wanted. He keeps the tv on Fox News 24/7. My ds got all his audio equipment, tv, DVD player, set up so he was good to go. He used the headphones for a few days, and then went back to just playing everything loudly so we all got to hear it. If I closed his bedroom door to try to dampen the sound he got offended.

 

He leaves the tv and the lights on all day and night. His room is a mess from trash, food, and stuff everywhere. It is driving me crazy that he won't do for himself what he can do for himself. He wants cooked meals three times a day, and he'd like them at set times. I usually only cook dinner, but we have plenty of food in the house so there is no danger of starving. I told him that I won't necessarily cook him breakfast every day (eggs, grits, bacon, toast), but when he is hungry he can ask. If I have time I will and if not he can have cereal, toast, fruit, yogurt, etc. He WON'T do it. He would rather starve. If I offer him a turkey sandwich for lunch, he will decline. He says he doesn't think turkey sandwiches "do their job". What???

 

Now to the bigger problem. His leg wound would not heal. Many trips to his doctor. He got constipated, we over treated which resulted in the opposite problem, he fell when trying to get in the shower to clean himself up, and he wound up with e-coli in his leg wound. In the hospital over Christmas followed by outpatient iv antibiotics for two weeks. Wound finally healed after 4 months.

 

He has had a Foley catheter for 9 months. Recurrent UTIs mostly because he won't use the bed bag at night, so the urine backs up when he lies down and puts his feet up (major edema - another reason wound wouldn't heal). Diarrhea a few times because he thinks he needs enemas. He won't wear diapers, because they don't work. He'd rather see me on my hands and knees cleaning up the mess, I guess.

 

Recently he has been in the hospital three more times. First for sepsis from a UTI, then for pneumonia and a white count of .6 (also told he has mrsa), and currently for c diff (cleaning that up at 3:00 a.m. was a real treat. He thought sitting in his recliner with NOTHING on his lower half was a good idea). He went to rehab after the last two hospitizatiioms and probably will after this one, too.

 

Dad does well at rehab, comes home and won't continue the PT, won't sleep in the bed and elevate his feet, and goes downhill. Surprise. He thinks that he is "allergic" to something in our house and that is why he keeps getting sick. My dh would rather that dad not live here anymore. He thinks that dad is too sick, and all the infections bother him. I don't know what to do! Dad is on a vey limited income, has no assets to speak of, and we are not in a position to pay for a care facility for him.

 

Dad currently has: prostate cancer (pallliative chemo every three weeks), severe COPD, a Foley catheter, skin that tears if you just think about touching it, and many other smaller issues. It is overwhelming to me. I have fibromyalgia, and pretty bad generalized anxiety disorder, panic attacks, and some OCD tendencies (I have to wash my hands every time I touch anything that dad could possibly have touched. I can't stop myself). I have four kids still living at home, watch my 3 grandkids 35 hours a week, and we run two businesses. I feel like I might have a breakdown. Seriously.

 

What do I do? Please gently give me advice...

Edited by Cindy in FL.
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Oh dear. That sounds so hard.

 

I don't have a ton of advice, but we are dealing with elderly parents with severe health issues, who refuse to live with us, but need assisted living and some nursing care. I posted here for help learning to navigate how to pay for care. We don't have things ironed out yet but just googling our state and elder care was helpful. I learned that it radically varies state to state, even county to county. We finally decided to consult an elder care attorney, and found a state run program that helps seniors figure out their options, through social services.

 

Your dad may qualify for Medicaid or nursing either in home or in a facility. It depends on your state. Have you checked that yet?

 

Mostly, I want to say you're not alone, and you can get through this! Hang in there.

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If he's low income and no assets, I would investigate Medicaid. Is he a veteran?

 

Does he have a primary that you can talk to? Or maybe even call the rehab facility and ask for a social worker? Social workers can usually help you figure out your options.

 

((((Hugs)))

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He needs nursing care...either in home or out of the home, and it sounds like you are overwhelmed.

 

Put on your oxygen mask---do you need meds to control your anxiety right now while you sort out options?

 

I would start making phone calls to see what your options are.  Personally, I would look to see if he qualifies for nursing home care.  It kinda sounds like he does.

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He is currently on Medicare with a supplement. He is a veteran and gets some of his medicines through the VA, but most of his doctors are not VA. he would not be amenable to changing his doctors.

 

I will get in touch with the hospital's care coordinator and see what they suggest.

 

If he's low income and no assets, I would investigate Medicaid. Is he a veteran?

 

Does he have a primary that you can talk to? Or maybe even call the rehab facility and ask for a social worker? Social workers can usually help you figure out your options.

 

((((Hugs)))

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Cindy, is he a veteran? Does he receive treatment through the VA? Just looking for other avenues through which to find advice, social workers, etc. beyond Medicaid...

 

I would start with telling your children to remove the grandchildren to other care. They should not be leaving them in your care for 35 hours per week while you have this tremendous responsibility with your Dad, and you have fibromyalgia, and they should not want the exposure to ongoing C-Diff and MRSA issues. I understand looking around and feeling like the only one who can help with Dad <3 but the rest of the family should be lifting burdens where they can. If it's feasible at all, you might want to insist upon that.

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I will probably get in touch with my primary (she's an absolute gem!) and talk through medication possibilities.

 

He needs nursing care...either in home or out of the home, and it sounds like you are overwhelmed.

 

Put on your oxygen mask---do you need meds to control your anxiety right now while you sort out options?

 

I would start making phone calls to see what your options are. Personally, I would look to see if he qualifies for nursing home care. It kinda sounds like he does.

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He is a veteran, and goes there for meds, a once a year check up, and vision care. I can contact them about care options.

 

My oldest is probably moving in the next several months so that he can get employment that will make them more financially stable. That would mean I won't have the grandkids any more. I don't know if other childcare is feasible right now, but we can discuss that.

 

Cindy, is he a veteran? Does he receive treatment through the VA? Just looking for other avenues through which to find advice, social workers, etc. beyond Medicaid...

 

I would start with telling your children to remove the grandchildren to other care. They should not be leaving them in your care for 35 hours per week while you have this tremendous responsibility with your Dad, and you have fibromyalgia, and they should not want the exposure to ongoing C-Diff and MRSA issues. I understand looking around and feeling like the only one who can help with Dad <3 but the rest of the family should be lifting burdens where they can. If it's feasible at all, you might want to insist upon that.

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He is currently on Medicare with a supplement. He is a veteran and gets some of his medicines through the VA, but most of his doctors are not VA. he would not be amenable to changing his doctors.

 

I will get in touch with the hospital's care coordinator and see what they suggest.

 

 

My mom and dad just went through a few years of this with mom's dad. He too was a veteran. And, he was totally committed to staying out of the nursing home and/or facilities. My mom is a retired RN and it soon got too much for her physically (to lift him) and emotionally as well.

 

You need to remember that getting your dad help...IS loving him and honoring him. AND, there is absolutely nothing wrong with saying, "Dad, the care you need is beyond my knowledge and ability." It sounds like it is time to look into all the other options PPs have noted.

 

Regarding switching doctors, why don't you get the support of his current doctors and have them help you advise your father on moving along to VA dcotors/care, etc.? At some point, I do just think you have to lay down the ground rules. You are no good to anybody, including your father, in an upset and worn out state.

Edited by MommyLiberty5013
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He is no longer able to live on his own. He can barely get around in the house on a good day, and he's a fall risk. The only places he goes at this time are to doctor appointments, which almost always wind up being 3 days a week. I'm his only living child, but I can get help from cousins/aunts/uncles when necessary. My kids are great about helping out as their school and work schedules allow. They will run errands, pick up/drop off the grandkids, etc. i don't like sending them to doctor appointments with my dad, as he usually misunderstands what the doctor is asking or saying.

 

Giving up the businesses is not really an option, not caring for the grandkids would be a hardship for my ds and dd (in law) which I would rather avoid if I can. Dad in a facility seems like it might be best if I can deal with the guilt!

 

This is said very gently as someone who has been there done that. ( My dad lived with us for 6 months and then I took care of him at a small house we found for 4 years or so until he died. Also taking care of my husband's grandmother with dementia. She lived to be 102.) There isn't enough of you to go around. You need to decide what your boundaries will be. You have listed enough for 3 people. You have several choices, and none of them are wrong: giving up on watching the 3 grandkids, not running the businesses, putting your father into some kind of a facility, etc. I would start with YOU and self-care. What do YOU need to stay sane. Then go from there.

 

For me, I chose to make my dad move out to his own place and hired people to check on him daily, got meals on wheels and a housekeeper. ( He paid, but I got it organized.) I then chose one afternoon a week where I was available to take him to Walmart, to a doctor's appointment, etc. Sometimes other hospitalizations interfered with this, but generally that was the rule. I also took him to church with us on Sundays. He probably wanted more time, but it was all I had to give at that point.

 

For my husband's grandmother, we chose to put her in a memory care facility. I got her meds and supplies. My children and I went once a week to visit her. I felt guilty, but that is really all I could give. I had to keep my own sanity.

 

Singing in Praise Team was non-negotiable. It was my recharging. I gave up other things for caregiving, but not this.

 

So list out your hours in a day and what you can give. Put in your recharging. You have to have your own oxygen mask on.

 

Parenting your parent stinks. There is no other way to say it. It just does. Praying and remember, you can only do what you can do. Talk to your children and see how they can help. Could some of those with kids watch him/care for him awhile so you can get a break??

Edited by Cindy in FL.
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I did take my boys to see Wonder Woman last week (we all loved it!) and I was surprised at how much I enjoyed just getting to do something normal and fun with them without thinking about anything/anyone else. I don't want to miss out on the last of my time with them before they all fly the coop

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He is currently on Medicare with a supplement. He is a veteran and gets some of his medicines through the VA, but most of his doctors are not VA. he would not be amenable to changing his doctors.

 

I will get in touch with the hospital's care coordinator and see what they suggest.

 

 

If he is a veteran, look into Aid and Attendance:

http://www.benefits.va.gov/pension/aid_attendance_housebound.asp

 

I have been there but with the more extensive problems being dementia than health (though a good bit of that, too.) Over three years of what became full time care after caring for my mom through home hospice late stage cancer.  We moved dad almost a year and a half ago, my health still hasn't recovered, and my marriage is just getting better.  Your situation sounds similar enough that all I can say is: Please, please look for other options. 

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He is no longer able to live on his own. He can barely get around in the house on a good day, and he's a fall risk. The only places he goes at this time are to doctor appointments, which almost always wind up being 3 days a week. I'm his only living child, but I can get help from cousins/aunts/uncles when necessary. My kids are great about helping out as their school and work schedules allow. They will run errands, pick up/drop off the grandkids, etc. i don't like sending them to doctor appointments with my dad, as he usually misunderstands what the doctor is asking or saying.

 

Giving up the businesses is not really an option, not caring for the grandkids would be a hardship for my ds and dd (in law) which I would rather avoid if I can. Dad in a facility seems like it might be best if I can deal with the guilt!

 

Guilt? Nope. Don't listen to that voice. Seriously. You are not a medical professional that your dad needs at this stage of his life. Your training is beyond this level of care. Having these conversations with his doctors and care givers is helping him a long in these difficult times.

 

Don't think of this as, "What I am doing TO dad." Think of it as, "What I am doing FOR dad."

 

And, you can still be active in his life with time and visits. Those will hopefully enable conversations and nice moments together when someone else is dealing with his bathing, toileting and skin care. You will still be involved and an advocate for him.

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I did take my boys to see Wonder Woman last week (we all loved it!) and I was surprised at how much I enjoyed just getting to do something normal and fun with them without thinking about anything/anyone else. I don't want to miss out on the last of my time with them before they all fly the coop

 

Ds and I lost most of our last 3 years of high school.  Nothing we planned was able to happen as the care became more and more demanding on me and my health failed.  We've both come to terms with it, but both wish I had been able to see forward to a better answer sooner.  Good Luck!

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Guilt? Nope. Don't listen to that voice. Seriously. You are not a medical professional that your dad needs at this stage of his life. Your training is beyond this level of care. Having these conversations with his doctors and care givers is helping him a long in these difficult times.

 

 

THIS!!  I felt like I loved him more than anyone in the world and could/should give him the best care.  Never mind the promise I made to my mom on her deathbed! 

 

The truth is the professionals are doing a so much better job than I did.  They provide meals and activities that he likes at the same time every day.  They are trained to do all of the things that I struggled through.  There are three shifts of them each day, instead of one of me on call 24/7 so they are more well-rested and patient.   They have done this for years and know what they are doing.

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Gently . . . 

 

I had my momma live with us her last 18 months, and it was the hardest and best thing I've ever done. I would do nothing different, even though it was so brutally hard. 

 

But . . .

 

In your shoes, I'd find my dad a nice nursing home and move him in ASAP. That's that. If he's broke, he'll qualify for Medicaid. If he's not that broke yet, he'll just have to spend down his money and then transition to Medicaid (that's typical). If he has substantial funds (say over 100k), talk to an Elder Law attorney NOW about strategies to spend down his funds towards things he'll NEED later (and won't have $ for), etc. 

 

Next time he goes into the hospital and ends up in rehab, you need to make sure he goes straight into a placement. DO NOT LET THEM RELEASE HIM TO YOU. If you remove the option of him living with you, they'll have to find him a place. That's that. They're not gonna' put him on the street. 

 

Do your research now on finding a good placement. Talk to locals who know the local options and figure out the finances/logistics of getting him in somewhere. Most facilities have social workers and obviously deal with this stuff all day long, so you'll find people who can advise you. You might even be able to move him in directly ASAP w/o another hospitalization, who knows. Ask. Visit places. Talk. 

 

End of the day, no way is this a tenable living situation long term, IMHO. I'd find him some place as nice as possible, visit often, bring him out to visit you often, but, I'd have a short count down to moving him out of my home. 

 

So sorry you are struggling with this. It is more than I could bear. You've done MORE than your duty. (((hugs)))

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to be blunt - with his medical needs - he needs to be in care center.  he won't care for himself - and he expects you to do everything.  YOU. HAVE. CHILDREN. at home.  do not feel guilty that you can't do it all.  the rehab centers should be able to help with finding an appropriate long-term bed.

 

you are his daughter - so he likely sees no reason to comply with your "rules".  he should never be allowed food in his room.

 

in addition - a care center will do three hot meals a day.  they will make sure his "mess" never gets out of control.

they will deal with his "noise".

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Guilt? Nope. Don't listen to that voice. Seriously. You are not a medical professional that your dad needs at this stage of his life. Your training is beyond this level of care. Having these conversations with his doctors and care givers is helping him a long in these difficult times.

 

Don't think of this as, "What I am doing TO dad." Think of it as, "What I am doing FOR dad."

 

And, you can still be active in his life with time and visits. Those will hopefully enable conversations and nice moments together when someone else is dealing with his bathing, toileting and skin care. You will still be involved and an advocate for him.

 

:iagree:  :iagree:  :iagree: 

your father's needs cannot be met by one person - not even one fully trained medical professional who has nothing else to do would take him on.  even if that is ALL you do, he needs multiple people who are regularly scheduled.  he will do much better on a strict schedule.  that means a care type facility of some sort.  nursing home, group-home for elderly, whatever - they have multiple people working there, each with their own area of responsibility.  they have schedules -including entertainment, activities, and socializing.

 

they have multiple people for most roles so they get days off.  they get to go home and actually sleep at night and unwind. . . . those are things YOU do NOT get to do.

 

by turning the bulk of his regular care over to other people - you will be able to have more positive visits with him.

 

 

 

YES YES YES.  And saying this gently.  There is only one you .  You only have so much physical and emotional energy.  That may not be fair or what you hope for, but the alternative is you will get very sick either physically or emotionally.  

 

rinse, repeat.

 

Gently . . . 

 

I had my momma live with us her last 18 months, and it was the hardest and best thing I've ever done. I would do nothing different, even though it was so brutally hard. 

 

But . . .

 

In your shoes, I'd find my dad a nice nursing home and move him in ASAP. That's that. If he's broke, he'll qualify for Medicaid. If he's not that broke yet, he'll just have to spend down his money and then transition to Medicaid (that's typical). If he has substantial funds (say over 100k), talk to an Elder Law attorney NOW about strategies to spend down his funds towards things he'll NEED later (and won't have $ for), etc. 

 

Next time he goes into the hospital and ends up in rehab, you need to make sure he goes straight into a placement. DO NOT LET THEM RELEASE HIM TO YOU. If you remove the option of him living with you, they'll have to find him a place. That's that. They're not gonna' put him on the street. 

 

Do your research now on finding a good placement. Talk to locals who know the local options and figure out the finances/logistics of getting him in somewhere. Most facilities have social workers and obviously deal with this stuff all day long, so you'll find people who can advise you. You might even be able to move him in directly ASAP w/o another hospitalization, who knows. Ask. Visit places. Talk. 

 

End of the day, no way is this a tenable living situation long term, IMHO. I'd find him some place as nice as possible, visit often, bring him out to visit you often, but, I'd have a short count down to moving him out of my home. 

 

So sorry you are struggling with this. It is more than I could bear. You've done MORE than your duty. (((hugs)))

:iagree:

this.  I had to put my foot down with my mother - no, you can't go back to your apartment.  she wasn't happy.  HOWEVER, she needed the medical supervision, far more dietary support than I could possibly give her,  and care.

she wanted to live with me - it wasn't an option, and she was much less demanding than your dad.  I was able to run her for her errands, dr appointments, and have positive visits with her. 

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I just spoke to the infectious disease doctor, and she went over the options for treating the c diff. Her recommendation is a fecal transplant, because she doesn't think he would survive the removal of his intestines and recovery. So she is going to talk to his oncologist to get his opinion on the transplant based on dad's immunodeficiency. She also said that her only two patients that had a problem with the transplant we're in a nursing home, so she does not want him in a facility. I would take him to Tampa for the procedure and then he would have to come home.

 

I'll wait and see what decision they make, and go from there. I would think he could go into a facility after he recovers?

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Gently . . .

 

I had my momma live with us her last 18 months, and it was the hardest and best thing I've ever done. I would do nothing different, even though it was so brutally hard.

 

But . . .

 

In your shoes, I'd find my dad a nice nursing home and move him in ASAP. That's that. If he's broke, he'll qualify for Medicaid. If he's not that broke yet, he'll just have to spend down his money and then transition to Medicaid (that's typical). If he has substantial funds (say over 100k), talk to an Elder Law attorney NOW about strategies to spend down his funds towards things he'll NEED later (and won't have $ for), etc.

 

Next time he goes into the hospital and ends up in rehab, you need to make sure he goes straight into a placement. DO NOT LET THEM RELEASE HIM TO YOU. If you remove the option of him living with you, they'll have to find him a place. That's that. They're not gonna' put him on the street.

 

Do your research now on finding a good placement. Talk to locals who know the local options and figure out the finances/logistics of getting him in somewhere. Most facilities have social workers and obviously deal with this stuff all day long, so you'll find people who can advise you. You might even be able to move him in directly ASAP w/o another hospitalization, who knows. Ask. Visit places. Talk.

 

End of the day, no way is this a tenable living situation long term, IMHO. I'd find him some place as nice as possible, visit often, bring him out to visit you often, but, I'd have a short count down to moving him out of my home.

 

So sorry you are struggling with this. It is more than I could bear. You've done MORE than your duty. (((hugs)))

100% agree.

 

No matter how much we love our parents, the fact remains that AS ADULTS, the need to consider our own long term needs is a necessity. Too often, people fail to face this responsibility, to look ahead and plan accordingly, and the burden for arrangements of all kinds falls to the children. My elder care attorney calls this the "die in place" mindset, and it is utterly irresponsible.

 

It is not your responsibility to make up for his lack of planning for this phase of his own life. Whatever you choose to do in this regard is your gift to him, not your burden. Whatever else you do, do not allow yourself to feel guilt over whatever choice you make.

 

Also, if your father does get a placement in nursing care, be sure to give yourself a good stretch of time to recover from your time of caregiving. It is utterly exhausting - physically, mentally, emotionally, even spiritually. As you are living it, it can be difficult to recognize the toll it's taking because you are busy just trying to keep your head above water.

 

(((hugs))) it's a tough place to be.

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Guilt? Nope. Don't listen to that voice. Seriously. You are not a medical professional that your dad needs at this stage of his life. Your training is beyond this level of care. Having these conversations with his doctors and care givers is helping him a long in these difficult times.

 

Don't think of this as, "What I am doing TO dad." Think of it as, "What I am doing FOR dad."

 

And, you can still be active in his life with time and visits. Those will hopefully enable conversations and nice moments together when someone else is dealing with his bathing, toileting and skin care. You will still be involved and an advocate for him.

 

This times infinity. He is compliant with therapy and medical care when he's in rehab. He's not at home. 

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I just spoke to the infectious disease doctor, and she went over the options for treating the c diff. Her recommendation is a fecal transplant, because she doesn't think he would survive the removal of his intestines and recovery. So she is going to talk to his oncologist to get his opinion on the transplant based on dad's immunodeficiency. She also said that her only two patients that had a problem with the transplant we're in a nursing home, so she does not want him in a facility. I would take him to Tampa for the procedure and then he would have to come home.

 

I'll wait and see what decision they make, and go from there. I would think he could go into a facility after he recovers?

 

You need to explain to her that you are unable to provide the level of care he needs in your home and ask what she suggests and go from there. 

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Cindy, I mean this lovingly and gently, but you are dealing with a lot of end of life quality of life issues.

 

In the big, big picture of things, try to order things in the way that you are at peace with things. The c.diff dr is giving you the info to handle cdiff in the best possible way. That doesn't solve the terminal cancer, COPD problems that are still in the picture and will never go away.

 

What do you need to make these last weeks/months/potentially years work? How can you go back to a father/daughter relationship with healthy boundaries so that you aren't left with a bucket of resentment?

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He can go into a facility after he recovers, but it's a LOT easier for him to go directly from the hospital. Also, direct from the hospital stays at a rehab center are (I think) covered by Medicare. During his stay in rehab, you would have time to work on a permanent placement WITH social workers to assist you.

 

I'm sure the doc wants him at home for infection control purposes. However, what would happen if you simply said sorry, that's just not possible, he either has to stay in the hospital or be sent to rehab. Would she refuse to do the procedure? I mean, people go into managed care BECAUSE they have c. Diff and need the nursing care.

 

One really important question - do you hold (has your father executed) a durable power of attorney, naming you as a decision maker if he becomes incompetent? If not, you may want to think about that and decide whether or not you want/need such an instrument.

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NO GUILT if your dad goes to a care facility.  From what you described, he needs more care and more safety than you can provide.  

 

My dad lived with my mom (duh) and my sister.  She did more than I can tell you to take care of him, and she had a full time job.  He started falling, though, and still would not move to a safer place.  Well, I went out to see them, and just as I drove across the city border, I got a cell call.  Dad had fallen, and my sister and mom (age 92 at the time) could not pick him up.  And my mom hurt herself trying and still, 2 years later, has chronic pain and disability from THAT injury.  They didn't know what to do.  I hung up, called 911 (my mom was embarrassed by the sirens...eye roll), and drove up just as the ambulance was getting ready to take him away.  HERE IS THE POINT OF THE STORY:  The EMT told me that my dad was not hurt, but that the EMTs could not see a way for him to safely stay where he was.  He asked me why Dad was still at home, just given what he saw in the apartment (it was clean and so on...just not a safe place for a fragile person).  He said he was taking Dad to the hospital to give me time to make other arrangements.  Pretty point blank and I was SO GLAD.  My sister and mom were too close to the situation, and had been the frogs in the pot of water.  

 

I have no doubt my dad would have lived longer and been happier with more care than could be provided at home, and it would have reduced stress in the family and for my sister in particular.  

 

No guilt.  My dad did not live long after this event--he died two years ago June 15.  But he was comfortable and cared for and safe.  And my mom and sister were better off, too, with less stress and worry and exhausting care-giving.  

 

I will also say this:  I think you might be feeling more guilty than you ought *because* your dad is behaving badly...and that in itself is cause to want him to move along.  (Honestly?  My response to reading your mail was "She's living with a terrorist!")  So it doesn't feel like it is all about the care he needs but also about getting a PITB out of your house...and that gives you guilty feelings.  But the facts about the care he needs indicate the need for more care than you can provide a) ever, b) now, and c) with the other responsibilities you have.  

 

Your dad has put himself in a tough spot...he isn't happy where he is and is acting badly in that situation, and he isn't happy with his options.  The happiness is his choice.  The living situation probably isn't anymore.  

 

I loved my dad; my sister did the work of a saint caring for him and he knew it and even when he was grouchy, he appreciated it.  But everyone saw how much better things were when he got professional and 24/7 care.  No guilt.  Only sorrow at the sadness of disease, dying and loss.  

 

 

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I just spoke to the infectious disease doctor, and she went over the options for treating the c diff. Her recommendation is a fecal transplant, because she doesn't think he would survive the removal of his intestines and recovery. So she is going to talk to his oncologist to get his opinion on the transplant based on dad's immunodeficiency. She also said that her only two patients that had a problem with the transplant we're in a nursing home, so she does not want him in a facility. I would take him to Tampa for the procedure and then he would have to come home.

 

I'll wait and see what decision they make, and go from there. I would think he could go into a facility after he recovers?

 

him at your home is not an option - so what is her suggestion?  does she think you need to take him back into your house?  you physically can't meet his needs - you aren't now.  you have grandchildren.  they are being exposed to all of this - does the dr care about that?

all she's seeing is your dad. that's nice - but she needs to work with the bigger picture, and she's not.

 

can he do the tx at a rehab?

how long does she think he has to stay with you before he goes into a nursing home?  why did the nursing home patients have poor outcome?  was it the nursing home - or the fact their physical condition was *already* so poor that's *why* they were in a nursing home to begin with!

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I cannot speak to the larger picture of what to ultimately do, but I wanted to say that things like self-care and throwing away trash are often affected by dementia, even if it is mild. My MIL gets UTIs because she does not change her bladder pads often enough. She won't do it more often unless I or someone tells her to do so. Same with fixing food - she will fix food for herself, but not if it was on her to do so regularly; that's part of the reason she is living with others and not on her own. Same with clothing. She needs me to lay out her clothes, choose her clothes and launder her clothes. She will wear the same clothes continuously until I offer her different clothes (except she will change if she is too hot or too cold.)

 

I had to chuckle about Fox News 24/7; I've experienced that, too. Honestly, te only thing I'm really, really tired of is continuous TV all day long. My situation is different, though, because there is an end period where she will be going to another sibling's house, so there is a finite period of time for us. So, for now, I just grit through the non-stop TV and the snot rags that wind up everywhere. (Hugs)

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I just spoke to the infectious disease doctor, and she went over the options for treating the c diff. Her recommendation is a fecal transplant, because she doesn't think he would survive the removal of his intestines and recovery. So she is going to talk to his oncologist to get his opinion on the transplant based on dad's immunodeficiency. She also said that her only two patients that had a problem with the transplant we're in a nursing home, so she does not want him in a facility. I would take him to Tampa for the procedure and then he would have to come home.

 

I'll wait and see what decision they make, and go from there. I would think he could go into a facility after he recovers?

 

As his advocate, you need to push her to come up with an alternative plan for his recovery. He has already proven he will not behave as doctor-directed and allow his care for his health in your home. He cannot come to your home because he won't listen to the doctor's orders.

 

I think, to be blunt, you just need to lay down the law. "My Dad, coming home with me is not an option." Take that off the table.

 

These are serious medical conditions and highly infectious. And you are dealing with an elderly person who won't listen to what is prescribed.

 

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him at your home is not an option - so what is her suggestion?  does she think you need to take him back into your house?  you physically can't meet his needs - you aren't now.  you have grandchildren.  they are being exposed to all of this - does the dr care about that?

all she's seeing is your dad. that's nice - but she needs to work with the bigger picture, and she's not.

 

 

Many doctor's are narrow focused on the patient and their needs and don't treat the family as a whole.  She's just giving you facts from her side.  She doesn't know the details of the home life and how hard it is on you.  I'm betting you've never told her the whole situation, so she's actually giving advice without all of the facts.  

 

He will only do self-care when supervised in a facility, therefore a facility is the only place that treatment is likely to work.  He does better there and starts to fail when he comes home.  What worked for her other patients is not the right answer for him, I think.

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I do have a Durable POA.

 

He can go into a facility after he recovers, but it's a LOT easier for him to go directly from the hospital. Also, direct from the hospital stays at a rehab center are (I think) covered by Medicare. During his stay in rehab, you would have time to work on a permanent placement WITH social workers to assist you.

 

I'm sure the doc wants him at home for infection control purposes. However, what would happen if you simply said sorry, that's just not possible, he either has to stay in the hospital or be sent to rehab. Would she refuse to do the procedure? I mean, people go into managed care BECAUSE they have c. Diff and need the nursing care.

 

One really important question - do you hold (has your father executed) a durable power of attorney, naming you as a decision maker if he becomes incompetent? If not, you may want to think about that and decide whether or not you want/need such an instrument.

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I will tell her this when she gets back in touch with me. She did say 2-3 times that she is concerned about the kids and grandkids getting infected.

 

As his advocate, you need to push her to come up with an alternative plan for his recovery. He has already proven he will not behave as doctor-directed and allow his care for his health in your home. He cannot come to your home because he won't listen to the doctor's orders.

 

I think, to be blunt, you just need to lay down the law. "My Dad, coming home with me is not an option." Take that off the table.

 

These are serious medical conditions and highly infectious. And you are dealing with an elderly person who won't listen to what is prescribed.

 

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He does occasionally have slips in his memory which give me pause, but they aren't too bad yet. He seems to be a bit passive aggressive and noncompliant with regard to doctor's orders. The home health nurse (they come every three day to do wound care) got on to him the other day because he is always making up excuses as to why he doesn't do what he's told.

 

My MIL had dementia and we rotated with each of dh's four siblings to care for her. She would wear the same clothes every day without them being laundered unless you snuck and got them. It got very difficult to care for her because she got physical and angry with one of my kids in particular. They did finally make the decision to put her in a facility and the stability was what she needed.

 

I cannot speak to the larger picture of what to ultimately do, but I wanted to say that things like self-care and throwing away trash are often affected by dementia, even if it is mild. My MIL gets UTIs because she does not change her bladder pads often enough. She won't do it more often unless I or someone tells her to do so. Same with fixing food - she will fix food for herself, but not if it was on her to do so regularly; that's part of the reason she is living with others and not on her own. Same with clothing. She needs me to lay out her clothes, choose her clothes and launder her clothes. She will wear the same clothes continuously until I offer her different clothes (except she will change if she is too hot or too cold.)

 

I had to chuckle about Fox News 24/7; I've experienced that, too. Honestly, te only thing I'm really, really tired of is continuous TV all day long. My situation is different, though, because there is an end period where she will be going to another sibling's house, so there is a finite period of time for us. So, for now, I just grit through the non-stop TV and the snot rags that wind up everywhere. (Hugs)

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:grouphug:

 

My dh was the main doc for his group practice's nursing home care for years, and he has seen a lot. It is so difficult to deal with every level of detail of care for someone in your father's condtion.  I can tell from your description that your dad is at the point where his care will be better in a facility.  Better for him and you.

 

:grouphug:  :grouphug: I know it's not easy.  I hope you can have him admitted soon.  

 

 

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Please call the social working and get the ball rolling on finding him a nursing home situation.  Give your kids notice that you can't do childcare for the time being.  Can you get him like frozen meals or something in the interim?  This sounds completely untenable.  It is hurting YOUR health to continue this way. 

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