My husband of 25 years is having great difficulty with denial in regards to his advancing Parkinson's Disease and my increasing difficulty caring for him in our home.
I drew a final line in the sand this morning: He will need to move into a nursing home. I will need to visit him there every day. He does not believe that this is going to happen, likely because of mental changes due to PD but also because he has always been a denier.
I cannot, I will not change diapers on the man I love. Can't do it. Won't do it. He denies he has intermittent urinary incontinence, even in face of concrete evidence to the contrary.
Today, I told him that there were two ways we could get him into a nursing home.
He chose option 2, although he believes that if we go for option 2, he can convince the nursing home that he is not a candidate. Given our health care system, he may be able to do just that.
I wanted option 1 because I believe I can get more assistance (e.g., social worker at hospital) than with a facility that might have a vested interest in either turning him away (the better ones) or a vested interest in taking him because they need clientele (the lesser ones).
Input please. I am posting this is another forum as well since I'm new to this site.
Have you spoken with any facilities about their admittance policies?
Will you be self pay or Medicaid?
When you visit places, this is where you mention his reluctance.
Welcome and glad that you are here and that you have been honest with your husband.
Now do tell me that you are also his POA and that was done when he was competent. (This may be part of his will; a document called Spring POA) would allow your MD who treats his Parkinson's and one more MD, usually a neuro-psyc examiner) to write you in as POA.
You would then choose his plan of care after examination of his assets and yours with an Elder Law Attorney, and division of assets to protect your own money.
You would then examine placement. He may qualify for locked unit in inbetween care which is sort of an ALF with more staff and locked facility. Do the tours. Consider using A Place for Mom type businesses if he will enter self-pay.
Lots involved here. First is qualifying yourself to act and protecting assets. 2nd will be examination and diagnosis 3rd will be placement.
Wishing you so much good luck; hoping you have family or friends for support.
1. POA
2. Diagnosis
3. Choosing facility
After that he can be transported by medical van.
Good luck. Keep us updated if you will. Read up on the Forum; there's lots to learn here.
When you have time, read Contented Dementia by Oliver James. One tip from that book, for Move-In day (to the home): Have a family member or friend already there before he gets there, then have that friend/family member 'accidentally' stumble on husband and sit down for a chat. As if he/she also lives there. Also, if the gambit is that it is a 'temporary' stay, don't make his room look like home, initially, but keep it sparce as if it were just a hotel room.
If you do not have an elder care attorney licensed in your state, I would highly recommend getting one on board asap. Depending on how your "paper work" is executed; there may be things to do or not do and depending on your State law (each state law is different, re: things such as a POA, guardianship, finding the person lacks capacity to make decisions thereby allowing you to take over).
Further, the paperwork from a nursing home (AL or other facilities) is a contract! You'll want an attorney to review as there are "trick questions" in these contracts, such as you agree to take him back if funds run out or he's a "problem" resident. Those words "problem resident" are not in the contract, but tricky legalese can be confusing by intention.
You want the facility to have the responsibility of a "safe placement" if he cannot stay in the facility you choose. If you agree to take him back, they just dump him back in your lap to work it out.
These facilities are expensive, and an attorney can help work through ways to protect you financially as the spouse not in need of nursing home care.
Contact you State Bar Association for names of licensed elder care attorneys where you live.
Also, they will know the best facilities to consider!
Good luck with this
So happy you put your foot down, and that you will definitely advocate for him, yet sorry that this is now your lot in life.
I hope and pray that you get all the help that you’ll need to navigate through this rather tough, difficult journey!
Wishing you the best outcome ❤️
She will scream and holler and go on on about not having dementia.
She had a real fit when I first visited and stayed at her neighbor's home until the house was cleaned and sanitized. She took it as her home not being good enough for me, when in fact that wasn't it at all. She messed all over the house and beds and expected me to sleep in it. She thought it wasn't "tidy" enough because of papers lying around, clothes not folded and dishes in the sink. That wasn't even it at all. I had it professionally cleaned, but am sure it's right back to how it was before and I refuse to spend a penny more of my money to have it professionally cleaned and sanitized.
Be happy you're getting him in a facility. I envy all of you who have made this commitment. It's best for all involved.
I would go with option 2, because 911 failed me. If he changes his mind and not go, then try option 1, although it didn't work for me. All the best.
If the facility does NOT seem to understand, then you are in the wrong place or with the wrong interviewer.
Be confident in your answers. YOU know what it happening. YOU know what he will say and YOU have the truth. He says "I'm not incontinent" and you say to the staff member listening "that's why I clean soiled ... everyday" or whatever the specifics are. And get specific, not nuanced, don't hide ANYTHING "nasty". Be blunt with a loving, caring matter of fact tone.
As a daughter there are many items I did not think I would ever discuss with my parents or caregivers. At this point in my journey, nothing is off limits. Not potty stuff, not sexual stuff, not body irregularities, nothing. They aren't called "hard discussions" for nothing and the "hard" is on me, the cognitive person that handles the "everything" and has to talk to caregivers on a regular basis.
Be firm, loving and KNOW it is the right move for you. He will argue, deny, verbally abuse so you need to REALLY KNOW in your heart this is the right move AND keep knowing it through the junk. Safe your heart and your life.
Get your paperwork in order - DNR, POA, MPOA, trust, will, list of assets, etc. In Arizona, where my dad is (my mom passed last month) there is a Mental POA as well. I hope you have most of that in place already.
Does your husband need a "nursing home"
Seems that "nursing home" is a catch all phrase.
there are different facilities.
SKILLED NURSING facility or SNF is what many think of or used to think of as a "nursing home". The SNF is for people with medical conditions that need actual medical care or they have "tubes", oxygen, feeding, or "ostomies" that need care.
MEMORY CARE is a facility typically locked for people with cognitive conditions. And locked so that they do not wander out of the facility. Cognitive conditions would include any dementia, TBI, Downs, just to name a few.
ASSISTED LIVING is a facility where a person can live and get help from staff with their ADL's .. Typically not locked residents can come and go as they wish.
INDEPENDEDT LIVING a facility where a person would live just as you would live in any other apartment or condo. The facility may provide services that would may not be available in an apartment or condo. (I call my friends IL facility a "land cruise ship" it has all the stuff you would find on a cruise ship (including an ice cream machine!)
It sounds like your husband would be in either Assisted Living or Memory Care depending on his cognition and if he might try to leave the facility.
It might be wise to get his doctor to indicate in writing that he needs 24/7 care that can not be provided at home. YOU need to tell his doctor that you are unable to provide adequate care for him.
Everyone has a "line in the sand" and for you incontinence is that line. Although your other option would be to hire caregivers that would come daily to help care for him.
Please understand the differences of facilities that take care of our loved ones. Someone has posted about that. Facilities have evolved in this modern age to meet the needs of the residents they serve. Their caregivers are better trained than ever, attend training sessions as part of their jobs, and are kind, caring and wise. They wouldn't last long in those difficult jobs if they weren't.
I'm not a caregiving professional and have never worked in the medical field, but I've had lots of experience in placing loved ones and in caring for them at home. I have no vested interest in speaking up for care facilities, but I believe that they are sometimes needlessly maligned and that standard beliefs about them are often wrong.
Please don't underestimate them. Facilities handle things in a very professional manner in most cases, and your husband most likely will not be able to put anything over on them. He will be evaluated by professionals who are accustomed to anything he can throw at them, and he will be placed according to his needs. Our health system is much better than you're giving them credit for. My husband currently resides in memory care, his second one in the past 6 months. Both places are doing their very best, and he is content.
Why in the world would any facility have a vested interest in turning anyone away? They need to make money. And how would you know the difference between a good place and a bad one? Visit some. Then you'll have a more accurate picture of "our health care system."
I presume some that charge $5,000-$10,000 a month, they have top of the line trained personnel. However, nursing homes for those who depend on government aid is quite different.
Ultimately, a person moving in or having a loved one move in needs to do their due diligence, ask a lot of questions, take a tour, meet the staff, read the contract.
I mention this because you will need some time off, even if now you do not want to miss a day or think you 'should' be there every day. You need time to yourself - to renew, to learn how to be in your new life, too. It is a huge change for both of you. Lean on your friends as you can. Go out for lunch with the girls ... realize that you deserve to enjoy yourself as you will have more free time. And, you may feel very lonely / alone as this will be so new for you. Get the support you will need. And, good for you for taking a stand. Gena
As a care partner for an Alzheimer’s, patient, I have gone to the Alzheimer’s Support network and have learned about the brain change. We have to learn to go into their world as they no longer have the ability to be in ours.
Please get some counseling about your partners condition so you can make your life and his life much better and easier for both of you!
All understanding and changes about this disease will fall on your shoulders. They do not have the ability to understand or change! Praying for you as this is a long, ugly disease. And if you do not have the ability to take care of them, please find a facility that does. Praying for you.🙏🏻