How do I convince my husband with Parkinson's, it’s time for him to be in a nursing home? He has no dementia, but is fully incontinent?

Get a VNA Nurse In and tell them " He is having diarrhea and you hurt your back and it's time for the ER . " He Might Have C- FiDs They get this In Rehabs . You will Have a support person when you call 911 . Then Once In the ER and they admit him tell the case manager and social worker " I Can No Longer care for him , My back Hurts and you are worn out and he needs to be Placed . " Then you will have to Pick Out a Nursing home and go and ask the senior center which Ones they think are best , then Visit the Nursing Homes and read reviews on YELP.com . I bet you do Need a chiropractor . If You feel You Can Make the 911 call on Your Own go ahead . I had the VNA as My support and we agreed it was time for 911 with my Mother . Definitely get yourself a Therapist from your primary care doctor .

Hello. I am not married to my partner. He has had several falls including a head strike which revealed an 'old stroke', fractured L1 vertebra, bumps, bruises, and now he has an injured knee that wasn't x-rayed at the hospital. He was falling a lot. Parkinsons was mentioned, but not diagnosed. He was diagnosed with Vascular dementia and/or alcoholic dementia. This last took him to the hospital emergency room again. The hospital took me seriously this time when I said he needed 24/7 care. He was kept under observation to follow-up on a lung growth, but in reality he was kept under observation because I was done, and the emergency physician contacted his primary care Doctor on staff at the same hospital, and they knew it was time that he get placed. His dementia, small vessel disease, severe ulcerative colitis, cirrhosis, COPD, ambulatory dysfunction and tremendous weight loss of 90 signaled to his Doctor that he was dying, and I was told that 4 months ago. Yet he is holding on, and I was holding on too. It's not just one of us. His Doctor has been recommending hospice, but since he's still eating and he's still walking with assistance he is not qualified for end of life care. Also since he is only 64, he couldn't get the 90 day Medicare stay in a nursing home. I was at my wits end. I am 5 years older. I was helping him get up and helping him to get down on the toilet. Three days ago, he was placed in a nursing home. His knee swelled up due to his last fall onto concrete, so the NH is now providing follow-ups on everything. His doctors including a gastroenterologist said that it was too much for me. I had been communicating with my partner about this move for 'better care' for months. An OT told me he was depressed that he wanted out of the home. Being isolated in the home is terrible. After he had bladder cancer which was at stage one, he had a successful surgery to remove a tumor, he finally quit smoking. He has had home PT and two sub acute in facility rehabs in the last 9 months. Battling against making the right decisions for your loved one is very traumatic for all involved. Your husband like my partner with physical disabilities, are not able to function safely at home. I was severely sleep deprived, and frustrated that I couldn't help him. He signed himself into the NH. He knew it was too much for me. Social workers got involved, and we were both told his suffering at home was not helping anyone. My thoughts are to find a social worker to help guide both of you. Involve his physicians which we began with last year. It's difficult and mentally mind- boggling. My best to both of you. Oh, and my love won two games of bingo at the NH on his second day in, and that made him happy, even for a moment in time. He still doesn't know that he is slowly leaving this earth. His cognitive tests went well though. He doesn't have alzheimers, but he is incapable of understanding the full extent of his mental and physical limitations. He did say he was going to a NH to croak though. This man has had two near death experiences too. People can and do fight to live.

I’d like to thank everyone for your kind, thoughtful and experience-based responses. So many of you have traveled this path and it makes such a difference to communicate with others who have lived with these challenges and found a way to manage. Our situation has improved. It’s very difficult to get my husband out of the house so visits to multiple specialists aren’t realistic, however his GP is very good and he suggested we try a probiotic. My husband enjoys food and it’s one of the few pleasures he has left but I convinced him to give up 1 meal a day and replace it with a protein drink and banana. These solutions seem too simple but they are working-his stools are firmer and he’s making it to the toilet in time. For his urinary incontinence, he does well with a urinal that he can use while sitting as long as he doesn’t have to fumble with clothes so when we’re home alone his pants are off and he covers his lap with a towel or blanket. When a CNA is here, he wears Depends. I am looking in to respite care options through local nursing homes for him so I can take short trips with friends a few times a year. At his last appointment, his GP asked if he’d like to go on hospice and he said “yes.” After meeting with the admitting RN, we were told that neither his Parkinson’s nor congestive heart failure were bad enough-yet-to qualify for hospice and for that we are thankful. Considering all the different ways that Parkinson’s can affect a person, we feel blessed that he isn’t in pain and doesn’t have dementia. Thank you again for sharing so much about your experiences dealing with the challenges of debilitating and long term health problems. I am a breast cancer survivor so got a glimpse of the difficulty of being changed by a serious health issue during the 2 years I was in treatment and recovery, but I did get to recover whereas my husband is in year 6 of a condition that will only get worse and it was good to receive gentle admonishment from some of you about the importance of treating my husband with compassion even when I feel overwhelmed. Honestly, reading on this site about others’ situations makes mine seem minor and I am inspired by your patience and courage.

More guilt tripts. Please stop. Have you lived with frequent daily (and overnight) fecal accidents for weeks on end? No one WANTS to take this step so please, for the love of God, don't make the OP feel worse

Ask his doctor and/or neurologist what can be done for his incontinence. I'm assuming he is wearing disposable undergarments. Medication or diet changes may be needed too. I understand your frustration, but is divorce the answer?

I have had extensive experience with nursing homes. Sorry to say, that the majority of them are understaffed as they are for profit entities. My Mom was briefly in a nursing home after she broke her femur (she only lasted 3 months there before she passed). I was there DAILY. There is one CNA to like 15 patients. Most patients are in wheelchairs. They have "accidents" (fecal incontinence). I witnessed call bells blinking ALL THE TIME. Imagine the burnout of the CNAs. They are going room to room cleaning up "messes". My Mom "messed herself" and they got her out of her wheelchair back into bed to clean her up. Literally 5 minutes later, she had fecal incontinence again, but they were on to the next call bell. She was also a 2-person hoyer lift to boot. Needless to say, she had to sit in her poopy diaper for a while before the 2 CNAs could come back to attend to her. And I witnessed this first hand. It's terrible but a common occurrence in a nursing home. Imagine if I wasn't there to get her out of that 2nd poopy diaper. Believe you me, she would have been left sitting in that wheelchair a LOT longer by the time they came back around. And might I add, she was in a "5-star" facility.

I really feel for you. But in my case, should my spouse have incontinence and have all his faculties, I would never put him in a nursing home. Never. I vowed for "sickness and in health". Knowing what I have experienced in a "5-star" nursing home, I would hire additional help. 12 hours a week is probably three 4-hour shifts. People on this forum will tell me I'm guilty tripping you but I'm not trying to do that. In my case, I would do everything possible to keep my husband home with me. Yes, incontinence is a very tough situation. I hear you. But it is what it is. That alone would not be a basis alone to put my "no dementia" spouse into a nursing home. But that's me.

Have you talked to a PD support group? Called your local PD organization for suggestions? As others suggested, his incontinence may have nothing to do with his PD. How long has he had incontinence of the bowels? You don't say. Weeks, months, years? Do a search on this forum for "incontinence" for excellent suggestions for dealing with this issue.

Your husband "refuses to go back" because he was probably in rehab in a nursing home and in 6 weeks experienced the lack of care there. I wouldn't want to go back either. It's a depressing place.

As another person suggested, you can always wait until he falls and goes back to the hospital. Then tell the discharge person/social worker he is unsafe at home and you cannot safely care for him anymore. They have heard that before. Then the process begins to have him placed. He will have no choice then if he cannot walk out of the hospital himself. If he does have all his faculties, can ambulate, and you don't take him home, he can call a cab himself and arrive at your doorstep. Will you then refuse to let him enter his own home? It's a painful decision to make.

You may wish to discuss his situation with his neurologist/PCP and maybe they can convince him to go to assisted living (private pay and more than periodic home care). Skilled nursing home care is not an option just because someone is incontinent.

Perhaps he will accept respite care in a facility every few months to give you a break. You are stressed to the limit right now. Try to have a CALM talk with him to let him know how this is affecting you. I'm sure you are having heated discussions while cleaning him up. He doesn't want to be incontinent. Do you have children or family support to help you?

Please let us know how you are doing. There are so many people on here who have been in your situation.

Please be mindful of "...hire more help" recommendations are very expensive and beyond many families resources.

I certainly understand.

OMG 😱 please don’t get a divorce! You’re not the first caregiver to experience this. You don’t try and “convince “ hubby…you just do it! I guess you wanted to try to take care of him at home..but you realize it’s too much..as he’s getting worse. While the aides are at home with him, go tour some facilities close by. Also see an elder law attorney for financial advice/plan of action. In the meantime, make sure he’s in diapers and has bed chucks underneath him at all times. In bed and on chair. Get incontinence supplies. Maybe take him to gastroenterologist to check colon/rectum…I wish you best. Stay strong. 💪 hugs 🤗

In women they can take the bladder up. And I also have had a rectocele done which helped me in the rectal area so he may need those surgeries for him to be continent again and enjoy the rest of his life since he has not senile. I would hate to think that my wife or my husband put me in a nursing home for this reason when there is treatment for me because I can still think I can still get up sometimes it's very hard and I need to have surgery again but I would hate to think my spouse gave up on me. And put me in a nursing home. That would just be heartbreaking and I don't think I could adjust to it. Or it would be very very difficult I would feel like I was abandoned!

I'veI've had Parkinson for 15 years no incontinence is he taking any opiates they can cause it you says he has the problem after he exerts himself so why not try and have him use a bedpan before you exerta himself
II think he's right there is probably a medical solution

What has his MD said about this new symptom of incontinence?
Is this incontinence the ONLY reason you feel unable to continue care?
IF there are other reasons, such as mobility needs, and etc, that you feel you cannot continue in-home care, can you enumerate them for us?

If you cannot go on with in-home care I would speak of this with a social worker currently involved with your husbands' medical team. If you cannot continue in care, and there is no solution for the problems occurring now for your husband and his medical condition, then placement is going to be necessary, and it will take the involvement of the medical team to make your husband understand this.

Most Parkinson's patients experience constipation but others have Small Intestinal Bacteria Overgrowth (SIBO) which gives them the opposite problem. The SIBO is easily diagnosed with the results of a breath test. The cure is a 2 week run of a very specific antibiotic. The fecal incontinence can contribute to a UTI. Are you only consulting a general neurologist for the incontinence? How about a GI doctor for the bowel issues? I am speaking here as a Parkinson's patient and a person with occasional recurring SIBO (I think this is the sixth time I've had SIBO.) We tend to blame everything on the Parkinson's but other problems do come our way.

Klwolf: Prayers forthcoming.

You better be sure that he does not have a UTI. He may have chronic constipation. He may be on medications that can cause constipation that can lead to incontience. He may have enlarged prostate issue. Saw palmetto supplement helps with prostate. Better get all this checked out first before you do anything irrational.

You don't have to divorce him, but you can refuse to provide these cares.

To be clear, he's in a diaper, I hope. And is there a reason he can't clean himself up?

There is no medical solution. Although, he can consult with his doctor about having a tube inserted, so all his incontinence mess will go directly into a bag and be disposed. That comes with it's own set of problems, and risk of infection.

His care needs are becoming more than you can manage. The next time he is hospitalized, refuse to take him home, and insist that he be transferred to a Memory Care or skilled nursing facility.
He's going to refuse as long as he thinks he has you to take care of him. You have already told him you can't. And it's going to get harder, not easier.
Can you hire 24 hour care at home? A live-in or caregivers who come in shifts?

Is Assisted Living an option for the two of you to move in together? Where you can get the help you need when you need it, and he still lives "at home" with his wife. Consider it and look into Continuum of Care Communities, which provide added levels of care as your needs evolve.

klwolf
To add a little bit of info. About a year ago hubs neurologist suggested it was time to start thinking about facility. As did his GP, SW and so on.
They recognized downward trajectory.
Have serious talk about his symptoms and how much you are unable or will be
for certain unable to do in the near future.
If your husband is in stage 3, in general 1, 2 could be 5 years each. Stage 3, 4, 5 about 2-3 years each. Most people in stage 5 have very limited mobility. Many don’t get to stage 5 as they succumb to something else.
But you are facing many years of unfortunate decline.

My husband has Parkinson’s as well. I think I saw some signs in 2010 already.
Although he is in advanced stage but because he was extremely strong and super healthy, so until about year or so he was fairly OK.
Now, as they say Parkinson has about 40 symptoms and they all show up. No incontinence, I am not sure if it is part of PD. His is more of autonomic dysfunction type of Parkinson so it effects many organs.
For me it is mental exhaustion so I understand how you feel.
My husband is going to AL, he is actually OK with that and even looking forward to it. Hoping he can be in nice AL for at least few years because with advanced spinal stenosis as well he will end up in wheelchair and NH.
We live in Canada, once people are hospitalized as he was 8 times since Dec. Drs and other professionals take it very seriously and are fairly straightforward about placement to do it before it is too late and there is lots of support for caregivers.
They realize at some point even with 24/7 care it is too hard. Prevention of all this is key.
Recognizing I am closer to burnout I got respite everyday, there is incredible understanding of my need to rebuild my life.
Talk to as many professionals as you can, are you sure he needs NH not AL?
It would be easier to convince him perhaps?
Or divorce could be the only option. It will only get worse. Depends on your husband age he could live for a long time, mostly Parkinson does not effect life expectancy or people diagnosed in their 60s live 20 years or more.

If the mind is good, that’s a very big step. I understand how difficult it is to care for someone because I’ve done that for my wife. But I also know how important it is to stay in a place that you’re familiar with. the mind is very powerful. I guarantee you he will not be happy there. Have you ever considered in home care someone who can change his diapers and help him with mobility.

I agree with DrLiz.
It seems like the best choice at this point would be an assisted living facility. The ALF my husband lives in currently has 12 residents who have Parkinson's, and they're all doing quite well. The quality of care and life in a good ALF is better than in a skilled nursing facility. And an ALF may cost less than a SNF.
If you want to explore all your financial obligations and options regarding medical divorce/spousal refusal/medicaid etc see a competent Elder Law Attorney - who can also help you with wills/trusts/medical directives.

Best of luck. You've reached a very complicated and stressful fork in the road and you will move past this with knowledgeable support.

Caregiving has to work for the caregiver first and foremost, or it won't work. The person requiring the care does not call the shots.

It sounds like he needs to have you somewhere with a higher level of care. But a nursing home a won’t be paid for by Medicare or after Medicaid unless someone has spent three midnights in the hospital. And it’s a pretty sterile institutional place to spend the end of one’s life.

I’d look for a nice assisted living in the community where he can get the care he needs, it’s more social, their activities, and you can go visit.

Is it mainly the incontinence that's the issue, or are you burned out on his care in general? I assume he's already wearing Depends or something similar, utilizing chucks on furniture/in bed, etc. I developed bowel incontinence at a relatively early age (related to adhesions from surgery for rectal cancer at age 28), and I have to say that this is my worst fear — i.e., that I'll reach an age when I need help with my accidents and no one else will want to deal with it. I say this gently because I know firsthand that cleaning up after a loved one (both parents in my case) is challenging on many levels, and that whatever your limits are, they are valid. I would just encourage you to explore assistive options, products, etc. with your husband's neurologist or other specialist if the incontinence is the deal breaker. Either way I wish you both the best as you navigate this difficult situation.

I’d suggest you both meet with his doctor, have the doctor explain whether the incontinence is permanent and what other symptoms or declines to expect. Hearing this directly from someone else may help understanding. Hire more help in home until you either cannot pay or another resolution is found. If he continues to be unreasonable and expect you to provide care you cannot handle, consider it a sign of cognitive decline. I have a friend whose husband moved to VA nursing home care after his Parkinson’s became unmanageable in their home. He’s doing well there and my friend visits him as a rested wife instead of a frustrated, burned out caregiver. You’re wise to know your limits, stay firm in finding a new plan. I wish you peace

We all have the right to make lifestyle decisions. This includes choosing where to live (within our means & ability of course). BUT, the rights of one person do not OVERRIDE another's.

No-one has the right to make someone else be their caregiver. Not even a spouse.

This was explained to my parents by their primary Doctor. Backstory: My Father needed an operation. Mother would only accept his help (refusing aide staff at home & also respite care) but he needed his own recovery. The Doctor advised my Father that Mother's refusal was possibly more than denial & stubborness. It could be lack of INSIGHT. Powers of reason can be diminished, especially when there are brain diseases or injury to the brain.

Your DH has both PD & a recent head strike. I am very sorry for this.

From the first Google search I found this;"Cognitive inflexibility, a form of executive dysfunction, is a common non-motor symptom of Parkinson's disease (PD)".

It sounds very frustrating and exhausting for you, and your husband. Twelve hours a week doesn't seem like enough help.

Unless your husband is a candidate for LTC (which can be covered by Medicaid plus his SSI), the cost of a facility will be very expensive. Have you considered increasing the hours of in-home help first, to the point where it almost equals facility care?

One has to medically and financially qualify for Medicaid. If your husband's assets (his community share) exceeds the threshold, he will need to spend down his assets first before financially qualifying. So, why not spend it on in-home help? Then you can both benefit.