Do not know how to make a decision about sending husband from hospice home care to nursing home/memory care. Burnt out and severely depressed.
I am at my wits end.
My husband is 64 and I am 60. Though we have similar health problems brought on be simialr lifestyles earlier in life his are much more severe than mine. he ended up with cirrohsis and I did not.
He has been my "Batman" for 25 years. Saw me through 2 full hip replacements and the time prior when I was crippled up unable to walk. He walked me off methadone maintenance back in the 90's. I was not a fun person to be around for those 18 months and even a good 6 months after. I am so grateful he did and appreciate that he was the only one after 4 other marriages that was willing to deal with it because he saw that the end reult was worth it.
He is the only one in 5 marriages to appreciate me and love me as I am completely. Always put me first.
I tried to be as selfless in our marriage but I know fell short many times. I am admittedly more selfish and just not nearly as good a person as he is. when he became ill I stepped up and have been ever since. It became gradually harder and harder as things progressed.
There is no cure, Cirrohsis is terminal ALWAYS. Unless you can qualify for a liver transplant. Taking care of yourself and clean up your diet and any other indulgences - will prolonge your life it will not save you.
2008- started to have more incidences of kidney stones - finally one that was imbedded in the wall of the kidney almost killed him
2009 post op giant kidney stone he still feels really bad. Doc calls and says go to the hospital NOW your blood sugar is 600. - He drove himself to the local ER.
2010-2015 Manages diabetes perfectly watches his overall weight diet etc. Received SSDI in 2009-2014 so he worked parttime - gave guitar lessons built electric scooter mods- saw me through health issues. I semi retire working about 40 hours a month. We both loved it We both get better physically and mentally
2015 July I return to work fulltime. we find better place and have the best XMAS we ever had anywhere.
2016 January- He comes down with pnuemonia- followed by swollen testicle and abdominal distention. ER says due to liver failure it is ascites. He has a communicating hydrocele inguenal hernia and abdominal umbilical hernia.
March 2016 liver doc takes wait and see approach
We move, property was sold.
May 2016 liver doc initiates HEPC treatment with new drug Epclusa and ribovirin
August 2016 Tells me needs to go to ER. I get ready when I go to wake him he is unresponsive. 11 variceal bleeds in his throat almost dies from blood loss enroute. 11 weeks ICU HAS emergency TIPS ( Trans hepatic porto-systemic shunt - to relieve pressure on the portal vein of the liver ) they cannot stop the bleeds. He comes home a week later.
Sept.2016 to 2017 - Shunt crushed by his body 6 interventions the first year and 1/2. I see him diminish. We move due to black mold in the apt.
2017 Dec his reg PCP retires new pcp rearranges all medication changing every drug and dosage etc . Cannot sleep abdomnal pain spasms from his body rejecting the liver stent.
2018 to 2019 He is less active, engaged with the world.
2020 Feb he develops blood clot in leg cannot walk no transportation help. Cigna drops him from care refuses treatment refills etc -
2020 March Falls breaks hip does not tell me. Cannot walk.Caregiver -say too ill for homecare.
April 2020 I come home is asleep- late afternoon next day I try to wake him then call EMTs. Coma from ammonia in brain. wakes up comes home returns 1 week later on ventilator this time.
Present : completely dependent, brain damage permanent. Has dementia, yells constantly, is combative physically. Rarely knows who I am. brought him home on hospice. work hours i have caregivers but not one second more. Mentally cannot handle it. I love him so much he is himself sometimes, rarely. He is confused angry yells all night long. Hospice meds fail to control it. I do not want to abandon him. Last place was overmedicating him, starving him. I don't know what to do. So Sad.
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I was referred to a smallinpatient ALF - but they take hospice patients as long as you have their hospice arrangements taken care of and in place. ( i do have that)
I am supposed to meet the woman on Friday and tour the facility.
It is small built from a residential home in a nice older neighborhood. From the Google view I see a fointain in the backyard and pathways like a garden stroll area.
AND the biggest thing of all they allow some visitation....
Now maybe she misunderstood what I was asking but we will see come Friday. Also I am not sure I can work out the financials for this ALTCS pays just a little over half a month and if that is the case it will not work. I need my checks to pay the bills on our current home i cannot pay half of his care expenses and my bills too .they can take his SSDI check but asking me to pay as much as I read about will not fly. Unless of course I just want to skip eating, and heating/cooling my home until after i retire which will take a whole lot longer as I will not be able to save a dime.
This is a difficult situation and your care for him comes through loud and clear. Placing him in a residential facility is not abandoning him, it is getting him the best care for his circumstances.
My MIL with dementia was showing the same symptoms. With appropriate medication she is now back to her old self. The meds are lorazepam during the day (don't know the dose) and 25 mg Seroquel at night for sleeping. She does not appear to be overly medicated.
I think people who are showing combative/agitated signs of dementia need some medication, but not too much. It would not surprise me that a facility would overmedicate to make the patient more manageable.
Karlosakitty: You must rally. You are stronger than you may realize. Sometimes when all may appear lost, you will receive the strength that you need to carry on. I am asking HIM to provide to you that fortitude. Prayers sent to you.💞
You would NOT, not not not NOT be abandoning him in a facility. You'd be giving him the care and relief he needs, that you do not have the training or physical ability to do. Your husband is suffering too. Being combative and mad all the time is no fun for him either. I don't blame you for being wary of another facility, but I promise not all of them are poorly run or neglectful.
My mom had chronic Hepatitis B all her life, but lived to be 90. She also had extreme end-stage Alzheimer's disease. Liver cancer killed her, not Alzheimer's. But she was on a feeding tube at the end, but she only had liver symptoms for a week before she died because the tube feeding started having residuals, which I knew to stop feeding her since it quit processing. Soon afterward her skin turned profoundly yellow (jaundice) and her eyes, and her stools turned pasty white. Her billirubin was not being disposed of due to liver failure from the liver cancer. All that happened one week before she died. Still, the hospice nurse came daily and we both agreed she needed no narcotics and was peaceful as she could be.
She lived to be 90 due to no drugs, no alcohol, good diet, and daily exercise. I walked her daily for five years for a quarter of a mile. She LOVED that! She was only bed ridden for 2-1/2 months because she could not longer focus how to get up. Even to the end she never needed a single narcotic or psychotropic drug. She was totally pain free.
I used hospice for 2 years as a kind of home clinic to supply her with her routine medications. I also did period lab draws. You pretty much have to demand those things. I knew what labs she needed and I asked for them and they did it. She only took a multi-vitamin, lopressor and 70-30 insulin. I also has her on lactulose which kept her bowels in good shape. I had to revoke her hospice for the feeding tube so Medicare would pay for it, but on discharge I reinstated her hospice. It was very easy. I only used the feeding tube as a last resort. I did not want mom to die of dehydration which is pretty barbaric. Mom died comfortably since all her needs were met. Mum always had good normal ammonia levels so lactulose is good.
Mum died almost a year ago and I still am trumatized by her death. I miss her terribly and it was hard to get on with life but I did it. Work..back in school at age 60. I got on with the business of living because mum would not want me to go into a self destructive route. So I managed for forge my own life..doing okay. But still painfully missing mum.
IF you can find a caring facility, you are not abandoning him, you are choosing the best care for him.
Struggling to manage him at home as his needs get beyond your ability to do the job is dangerous and damaging to you both.
We fight guilt b/c we do not want to feel bad about ourselves. If we have done things for which we really should feel guilty, we deserve to feel bad. Accept the guilt if appropriate, but put it into perspective as PART of who you are, not ALL of who you are.
Make the best and safest choices you can for your husband and yourself. Don't let fear of sentiment or guilt put either of you in danger.
You should keep him home and under Hospice Care. You should let him be medicated at night so you can sleep.
Don't worry about the over medicating,, Remember he is dying anyway and the meds will keep him comfortable.
He would feel more loved and safele being home in his own surroundings to die.
People do stop eating and drinking at the end of life.
Maybe you need to add a few extra hours of Caregiving once or twice a week so you can do something for you. Like go get a massage, go get a manicure, ect.
Prayers
Take him to the dr. see if they will try a new medication to attempt to reduce anger. Sis has not been angry or combative since the hospitalization really. She just got more confused and frustrated as time went on. She did try to scratch someone and staff had a fit.
over the last 6months at the new community she has become a cryer-loud at times disrupting others for hours. Not a good thing either. They were about to send her to the hospital but did not thankfully as she would have been in quarantined in the hospital and then after return at the facility would have been very very bad for sis.
You will have to do your home work to find a place-maybe introduce as respite care and some places will do. they need to know about his anger - unless meds can resolve or reduce ahead of time and whether or not they will accept with history of being combative.
I thought about bringing her home early covid as I had spent 6 months looking for a better place. I am glad I did not do that as I knew I would not be able to have her at my place forever and i could not do the work of 5-6 people all day every day. Some posters on this site have done just that while draining themselves emotionally and physically being unable to do for others or themselves as a result.
I just read your profile and you are concerned about letting him down. Don't you think that 24/7 care from medical pros is what he needs to be comfortable? And what about you? Wouldn't you better be able to deal with this if you could visit and be properly rested, daily respite? I think you recognize that but guilt is stopping you from making the correct decision.
And always remember, there are no perfect facilities.
HepC can be contracted a variety of ways In my case IV drug use in his prison tattoos.
So sorry that you are struggling with this situation.
Take care.
Talk to the Hospice Nurse or contact the Hospice Social Worker and see if ti can be arranged.
Often the Respite is in the Hospice facility some times it is in a facility that they have an agreement with.
Please take advantage of this benefit
Sorry ALTCS is state here in AZ stands for Arizona Long Term Care Services and is part of the AHCCCS program state aid.Arizona Health Care Cost Containment System..
The chaplain stopped by a few days ago and said in the weekly meeting they discussed getting me some respite care. that is last I heard.
Certainly my first rodeo this way my parents were out of state and taken care of financially privately .I have one daughter in Nevada but she has 4 kids and cannot come help right now. He does not have children. He is estranged from his family - mom died abut 5 years ago .I have been in touch with his sisters and niece. They all are over committed in various ways themselves and are supportive in txt and some phone calls they cannot travel across the valley so I can shop etc.
For those that do not know phoenix is a town that grew outward not up the city is miles and miles wide and long and growing all the time but always outward ever increasing in size not up taller but out including more and more freeways and miles.It can take over an hour or more to drive across town here depending on what time of day you do this.
I did put in a request to find him a facility nearby our home.Only to find ut that I will have to do the finding all they said was get a hold of ALTCS ( a days worth of phone calls at least)they will give me a list of places they cover then I have to choose.
Some of the places require private pay for one full year before they accept ALTCS payment.
I refuse to put him in a place I cannot see before we move him and that will not allow visits once a week. the last place was medicating him half to death because he yells and were starving him.He cannot feed himself and they were putting the tray by the bed and leaving it then coming later and taking it away. no one was helping him eat.
Because of COVID and the no visit rule these days no one is accountable anymore.You cannot see how someone is - only what they tell you.Some of these places are just scandalous collecting money and barely taking care of the residents. The only reason I found out is that they were greedy. When ALTCS funding was approved they called me and told me ( not asked me - told me) they were putting him in hospice that he was in "decline". He had stopped calling me at home. No one would return my calls or emails until finally I threatened them on their website . I have a very good lawyer and an elder law attorney I just retained from his referral.
I intend to followup at some point but my daily stuff is more important right now. cannot even cash my paychecks and transfer my money to my card so i can order groceries to be delivered. I have 3 checks in my purse and only 200 on my card left.I am trapped here.
Because he is unpleasant alot and even physical I cannot ask neighbors and friends to watch him it scares them.
I keep feeling like I really screwed up bringing him home but what else could I do they were neglecting hm and basically letting him die.
This situation does not have a happy ending I am thinking.
COVID has really made a mess out of everything and made placing him a difficult thing to do.
These are just the practical bits, though. You do not want to abandon him. You owe a debt to him because of how he stood to you in so many hard times. Well, now.
Your husband knew what you were like, even at your lowest ebb (I'm only echoing your opinion, by the way - it's not me who thinks poorly of you), and he *loved* *you* *anyway*. No need to be different from what you were, no need to pretend, no need to change for his benefit, only for your own.
The point is not about what you owe him or how much you should sacrifice for him. The point is that your husband chose you to be the person he loves and trusts no matter what. Whatever you decide is the best way through for you both, he would back you up on that.
Meanwhile, you need more hands. See what you can negotiate about visiting but first track down the right facility or the right agency.
Do you have any support groups you can talk things through with?
He is unpleasant verbally or incoherent the rest of the time.Yells alot about nothing at all and can get physical at times. Asking neighbors and friends is not an option it frightens them too much and i cannot in good conscience subject them to that.
Unfortunately the place he was in was not forthcoming at all about his condition. I would have opted to transfer him as opposed to bringing him home had I been made aware. I would never have tried to do this alone had I known.
Finding placement for him with someone I trust that can be transparent is going to be hard. COVID rules about no visitors leave me in the dark and anyone can tell you anything .Just like the last place that almost starved him to death .
Plus not just any place will take a patient who is verbally abusive and lashes out physically.
No 'Happily Ever After" happening here I am afraid.
Talk to the Hospice Nurse or contact the Hospice Social Worker and see if ti can be arranged.
Often the Respite is in the Hospice facility some times it is in a facility that they have an agreement with.
Please take advantage of this benefit
Don't feel guilty about doing it, because you are honoring your marriage vows to care for him in sickness. That vow does not mean that YOU have to do the care when you aren't even qualified to do it. Caregiving another with problems are serious as his is not a task for the faint of heart.
What a shame -- so young.
Itis really hard because he is there sometimes and looks at me and asks me what happened to him.I see how scared he is. Then he goes away and is the yelling kicking jerk who is cussing me out etc.
Watching this happen is hard enough but trying to actually take care of him that way is harder still especially after a full 8 hour day.I am 60 and the years are telling on me lately.My shoulder is out from trying to reposition him and will not heal. I strain my back over and over. I am up all night long with his agitation.I have told hospice the drugs are not working but they almost seem indignant being told that. and order more of same. Raise the dosage. I worry about OD. Everytime I get fed up and seek a new agency to help me get this right I find that I am just trading one evil for another.
I am out of options and answers.I do he best I can show up for work and come home. I sleep every chance I get to escape what I cannot seem to change.
yes he is too young to be going through this.I feel cheated we never got to have a period of retirement to just spend enjoying each others company and doing simple things we enjoy. It is hard to believe that just 6 to 8 months ago we were planning on buying a boat to go the lake on the weekends.
God bless ya!!
That's a whole lot!!
"I'm at my whits end " kinda says it all!!
As tough of a pill as it may be to swallow, he may be better off in assisted living/ memory care!
You're only human and can only do so much without losing your mind or resenting him!
ALFs are better equipped to deal with his needs.
They can keep him occupied!
They have "staff" to look after him 24/7.
That's more than just one person can handle on their own!
Again, as hard as it is, it may be what's best for both of you!!
NO shame!! NO guilt!!
God bless!!!