Follow
Share

He is much worse than before. He refuses to follow the “rules” given by the doctor. Also now he is worse but refuses to go back for follow up testing which is past due. I can not force him. The doctor says that “Something will happen” to bring this to a must go situation. It is hard to see the days he just can’t process information. He is very stubborn by nature. My EDS disease keep me from being as watchful as I should. He can be very sarcastic, verbally abusive, and my anxiety goes through the roof. No one seems to understand my position. His son just says sorry for your situation to me! This is his father and I wish he could help but he is too busy. Not sure what I can do.

Time to call Emergency Services Ambulance during next outburst. Have him transported to hospital where his Doctor already expects him. The terms you will use when you call is "My husband is out of control and I am very frightened; he has to go to the hospital". When he is IN the hospital the terms that you will use is "He cannot come home with me. I cannot take care of him anymore. I will not accept him at home. We need a Social Worker and to get him into the nursing home".
You say "His Son". Let me ask you if this is also YOUR son. If not, let Social Services know that you are losing your mind, and they need to contact his next of kin, his son. Then the son can decide if he would like to accept guardianship and care of the father and assist with placing him, or if the State should take over guardianship. There will be things that will have to be combed out by a lawyer to assure YOUR OWN assets for your life ongoing is not absorbed in the care of your husband.
So step one, when you cannot do this any more, call the Ambulance for the ER DUMP as I call it.
Do not take him back in your home and use the words "Sending him home is an unsafe discharge; I can't and won't take care of him any more".
See a Lawyer to protect your own share of your properties in your state (Elder Law Attorney) and try to get all the financial things worked out.
If this is the son of BOTH of you, tell him that you are planning to send Dad to Emergency Room soon, that you cannot care for him any longer.
Wishing you good luck.
Helpful Answer (13)
Reply to AlvaDeer
Report
Tudy72 Jul 14, 2020
Thank you for the advice! No, his son calls me mom and I refer to him as my son, but his mother died when he was very young and he does not remember her. I never adopted either one of the boys. His older son will not be in my presence. He is mentally ill and does not want to see us. I am not sure even where he lives. My two daughters were never adopted by my husband as thy had a dad until he passed 3 years ago. My husband and I always made sure our assets would be divided 4 equal ways when we are both deceased. He has always been very generous with my daughters. I have told my son that his dad is not doing as well and I need help. His answer is always “I am so sorry you are having this problem.” He is not willing to step up. I have asked. He agreed. He talked to his wife and withdrew his offer.
My problem now is I can not decide when I need to do what you have suggested. I will talk again to my own docs regarding this. They have already said I am not able to continue this.....but WHEN is my right time. I pray for guidance. I feel guilty. He would hate leaving here. My disease is degenerative and I am only getting worse as time goes on. I will call my attorney about referral to an elder care attorney. I am thinking now of telling him he MUST go for his physical and cognitive testing that is past due. Last month I was hospitalized for out of control pain, depression and pain and anxiety. Thank you for your concern and advice as no one really understands what my life has
(8)
Report
Hi Tudy, yes to everything AlvaDeer wrote. Also, be sure to mention your own chronic illness (from your profile) to the hospital if he goes there. Make sure your kids know to NOT NOT NOT pick him up from the hospital if he calls them and drive him to your house! I live in MN also. When my jerk stepFIL was discharged from the ER after a fall that did not even hurt him (but he had the beginnings of Parkinsons) I did not know the "vocabulary" of "unsafe discharge". He steadfastly refused to go into LTC which is what he needed. He gave the hospital my number and they literally harassed me while at work to come get him. Eventually they had the SHERIFF call me and told me they were transporting him back to his house and that I better find the key and let him in. It was soooo discouraging and we were exhausted from trying to care for him and our young family and business all at once. I wish I could have known then what I know now about "unsafe discharge".

Tomorrow you should call social services for Ramsey county (651-266-4444) or go to their website. Look under Adult Services and you'll see info for:
- Adult Protection
- Senior Services 
- Disability Services
- Mental and Chemical Health services

Request an in-home assessment and they may be able to provide you with some help, like light housekeeping, meal prep, rides, etc. Make sure you let a social worker know of your illness and that you don't feel safe in your own home. If your husband gets physical with you they (social services) will have you on their radar as a Vulnerable Adult and may be able to forcibly remove your husband permanently into a facility. This is what eventually happened with my FIL. I wish you rest, safety and peace in your heart as you navigate this stressful situation!

https://www.ramseycounty.us/your-government/departments/health-and-wellness/social-services
Helpful Answer (11)
Reply to Geaton777
Report
Tudy72 Jul 14, 2020
Thank you so much for your reply. Also for all the information you provided me. I am afraid. I feel guilty. I feel I am not strong enough to do this as he is so hard to fight with about anything. I feel trapped. I feel I should be up to this.....caring for him.
(1)
Report
What "rules"?

I don't mean to sound unsympathetic. I'm just puzzled by a treatment rationale that seems to expect a person with a degenerative brain disease to follow "rules."
Helpful Answer (7)
Reply to Countrymouse
Report
shad250 Jul 14, 2020
Rules to stay alive.
(0)
Report
See 2 more replies
Moderate to severe decline is a time where he may not be able to clearly make decisions. So the decision is up to you. Plan to make the move. Why wait for a desperate time with little time to make such an important decision. I believe in advance planning. Get him on a list for the facility you want. You may not be able to move him there when he has to get him there if you wait. You can do it.
Helpful Answer (7)
Reply to maryqesq1
Report

With brain disease all rules go out the window. They don't understand them, much less remember them.

It is time for you to let go of the guilt you are feeling. Do you think it would be more appropriate to feel guilt for not getting him the care he needs? Get him that care, get him in a facility. You have your doctor telling you that enough is enough. Take his advice and find a way. And caring for him includes getting him the care he NEEDS!

Who has his powers of attorney?
Helpful Answer (5)
Reply to gladimhere
Report
Tudy72 Jul 15, 2020
I have power of attorney and so does my trusted nephew.
(1)
Report
I too am dealing with a husband who is non compliant with doctor orders. Yesterday the cardiologist told him “it will come down to being admitted to the ER instead of taking care of the problems now”.
I am at my wits end also. I have asked around here and my other family members, no one can tell me what to do at this point but wait.
i get verbally abused all the time, he drinks excessively and falls.
i feel your pain. I wish I had better advice but it’s like the doctor says it’s just a matter of time.
I’ll keep up with your posts!
good luck! Marrha
Helpful Answer (4)
Reply to Marntson
Report

Tudy, your husband's doctor has laid out those ground rules for your husband's and others' safety and welfare BECAUSE your husband has difficulty remembering and working to standard operating procedures, such as stopping at red or turning off the cooker.

But you still think it's up to him to follow the rules? How is he to do that if he can't remember what they are or when they apply or even why they're there?

If you're not able to prompt and direct him through his daily routines, he needs to live with people who can.
Helpful Answer (4)
Reply to Countrymouse
Report

Hi, I hear your pain and experienced a similar situation with my husband. I took care of him for 4 years, before having to put him in memory care. I had to exercise my authority with him when it came to driving. Although, he was very strong willed after the 3rd time of almost hitting someone else on the road, he relented and didn't ask again to drive. Our experience with getting him the neurologist was about the same. I took him once and he refused to go back for follow-up. We waited a while longer and then he conceded and I got him to go back. I would ask his doctor for other options. Maybe someone will do a house call? I hope this helps you 😊
Helpful Answer (3)
Reply to HoneyBaker
Report
Tudy72 Jul 15, 2020
Thank you for your input. Yesterday I requested he go see the doc as it has been two years since he has had a physical. He claimed to know and use My Chart but could not get it to work so I will make an appointment today. In the past he has vehemently refused saying there is nothing wrong with him. If he is agreeable today I will make the appointment for him. Then the doc will make him go back to the,brain doc for another assessment. He has admitted he knows he is worse so that is why.....he does not want to hear he is in severe cognitive decline. I get that but it is everyone’s best interest we have that documented.
(1)
Report
It sounds like you are not able to take control of the situation. Waiting on DH to comply and do the right thing is not really a good option. It must be very daunting. That’s for sure. Plus, you say that you are afraid. Is he violent? That would really make it an urgent matter. Keep in mind that people with dementia sometimes act in ways that they normally would not.

I would immediately consult with an attorney about options. One option that I would consider is filing a petition for Incompetency. You can ask the court to appoint a third party as the Guardian. The Guardian will be unbiased and have no hesitance to make the right decisions for DH’s care and treatment. This would take the burden off you. Another family member might qualify, if they can show the court they are capable.

If you continue to sit by and not make the hard calls....I’d really talk to his doctors. Because, if the doctors are telling you, this must be done, something will happen...and then you don’t step up, they could report the matter to APS for an investigation. That would be very stressful and something you don’t need. My LO’s doctor told her that she needed AL and that it was not safe to be at home AND that she would not let it go. I knew what she meant. She gave her a little time to get into a facility.

I hope you can find some things that help.
Helpful Answer (3)
Reply to Sunnygirl1
Report

Hummm….he must be my husband's twin!! After confronting these same problems for the past year I have some suggestions and comments. Your husband has lost control of practically everything except the ability to control his own body. He can control not taking his medicine, not eating what he should and many other things to push your buttons. If he cannot drive that is a BIG thing for him to accept. Remember the husband you knew is not there anymore! Check out Teepa Snow's articles on the web for good advice. Among other things don't ask him an open end question. Give him a choice of 2 things and if he can't decide say "you always like the roast beef at this restaurant and if he doesn't respond order for him. If he won't take his medicine, put it by his side and 9 time out of 10 he will take it a few minutes later. Don't say "Do you remember? Say "I remember when you ………" As for the anxiety, I finally gave in to my doctor's advice to take Lexapro to help my stress! At least now I don't cry every morning when I get up. I pray everyday that God will help me make the right decisions in his care. Also take time to sit and hold his hand, even if you have a pile of dishes to do and a floor to sweep. Kiss him on the cheek, hold his hand and tell him you love him. He needs a lot of assurance! As for your son, he has a life of his own and probably a family to care for. Suggest he come for dinner or facetime him and his family . If you belong to a faith group they may have a caretaker's group who can share with you and support you. Our church has one and we Zoom twice a week and talk and share ideas that work for us. If you are his basic caregiver you probably can't get out for a meeting so zooming is perfect especially during this virus time. I've know my husband since we have been 14 and we are now 82 and it breaks my heart to see his change but do the best you can. I have found a lot of comfort in Max Lucado's on line studies some are free and his books. Especially "You'll Get through it". You are not going to "fix" your husband no matter how hard you try! I tray to live by the Serenity Prayer. "God help me accept the things I can not change, change the things I can and be wise enough to know the difference" Don't be so hard on yourself or otherwise you'll be dead and he will still be going strong! Take each day as it comes. There are a lot of us in the same boat. Find a sounding board, a good friend, preferably someone who has gone through the same thing. It helps a lot.
Helpful Answer (3)
Reply to grannynanny01
Report

See All Answers
Ask a Question
Subscribe to
Our Newsletter