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mrvaughan

Distinguished member
Joined
Nov 9, 2013
Messages
101
Diagnosis
05/2000
Country
US
State
MI
City
Grand Rapids
Hello everyone.,
I hope that you have had good holidays so far. This is a very blessed time of year, but also a hectic time.
Now for my story. Hopefully someone might have advice that I can use, or maybe just putting this down in writing helps me to not feel so overwhelmed.
I am the wife of a PALS, and while it is undiagnosed, he also either has FTD or a mania (that was suggested by our neurologist) brought on by being on the ventilator for almost 6 years. He has been very labor intensive, from discussions about relationships to having to have range of motion every hours, to refusing medication etc. I thought that this was the bad part. He was demanding of time, mad about a lot of things, ruler of the household and an on again off again, very hard to put up with man. I thought, well, even though this is bad, I can do this! WRONG ! Christmas day it took a turn for the worse. For the first time, he snapped at our grand daughters, told me he hated his presents and was generally in a bad mood all day. - Okay, I could handle that too. What came next was extremely hard to handle and I am not sure that I can. When he starts talking "crazy" his pupils get big, and the day after Christmas they were huge.
He started screaming for help, saying that he needed the police to take him away. In between us asking him what was wrong, and him swearing and throwing his mother out of the house, he just kept yelling HELP, over and over again. He kicked at the nurses, swore at his 8 month old grand daughter, screamed police, over and over again. My daughter and I moved him out of the mainstream of the house, and made him extremely comfortable in the back living room. He told us that we were hiding him and now the police couldn't find him. He yelled my name over and over again for at least an hour. But when I came to see what he needed, he would just swear at me, tell me I was going to jail, and demanding money, passport and a divorce. The episode lasted for over 20 hours. I can tell you that it shook me up very bad. One of the nurses quit and our daughter who helps take care of him was afraid to come back. We were able to get him an anti psychotic drug that we gave him and after 2 doses and another 18 hours, he finally fell asleep for a good long time.
Today, he appears tired, but "normal". I had felt like my husband had died and this crazy stranger was in our house. I know it isn't his fault, but he was so abusive, that I find I really don't want to go any where near him, unless it is to help with his needs. I started looking around for a care facility that will take him, but of course, I feel guilty about that. I really don't know what to do. I know this is not healthy for me, and he really seems like he is not happy at all.
Each time, I think that we are at the worse that it can get, it gets even harder. This has been a long journey that I hope against hope is almost to the end. I don't want to make those terrible decisions anymore. I don't want to be the "bad" guy anymore. I don't want this terrible disease to pull apart my family. I wish I could be more positive, but this past year has been horrible. Maybe in the near future, I will put the good parts in the stories of hope.
Take care everyone
 
I can't imagine your suffering and I am so sorry. It may be coming to the point that he may need a residential care facility. If he is becoming a danger to you and others to include himself, it may be the best for him and for you. No one wants to have to make that kind of decision, but you don't want neighbors or someone calling the police.

If I were you I would call a family meeting and make it a family decision. My heart and prayers go out to you.
 
Oh my God, I am so sorry! What a story! your whole family is living a nightmare. the good news is that the whole family is aware of the situation and you guys can all ban together to help your dear husband get the help he needs. he obviously has something big going on as I am sure that that is not the man you loved and married. right now you and your family need to go into super caretaker mode--do not take anything personal and do not wait and see if he acts better on his own. call his doctor and demand an eval. he needs meds to help calm him and put him at ease. if his behavior is chasing away your help everything will fall on you and you can not have that. you might need to have him admitted to a hospital while they get his meds correct so you and your family can regroup. It sounds like it is more than you and your family can handle alone and you need to get a doctor to help you. You are his advocate and you need to let them know that he is losing touch with reality.

I wish I knew more to help you--my heart hurts for you.
 
What Vicki and Barbie said goes for me as well. Having worked in an emergency department for over 20 years I would say that it would be completely acceptable to call an ambulance and bring him to the hospital during an episode like that. We would sedate him and he would be assessed as to the safest and best way to care for him. We would not judge you or think that you were being abusive or cruel. I have seen so many amazing people over the years that have succumbed to dementia, and have required specialized care in a facility that is designed for them. There is around the clock care, and adequate numbers of staff to deal with them. We have a "locked" facility that allows them to walk about, without fear that they will get into trouble, or out onto the street.

I remember finding the mother of a classmate, walking in the middle of the highway, with just her slacks and a bra on in the middle of winter. I managed to get her into my car, and take her to the hospital. She had Alzheimer's and was confused and wondered off. After that she was kept in an extended care home, where her husband sat with her every day that he could, and her family visited her often. They knew she was safe, and they were able to begin to live again, and enjoy the time they had with her.

I am so sorry that you and your family have to go through this. I pray that the correct decision comes to you, and that you have peace with what ever you decide.

Paulette
 
oh I'm so sorry you all are going through this!

It sounds like your neurologist already knows that there are serious issues going on which I hope helps you cope with what you are witnessing.

I have not had anything like the severity of this, but I have felt like some total stranger has taken over at times with my husband.

Is he now on the anti-psychotic regularly? I hope this will help prevent another episode like you endured. I agree with Paulette that maybe an ambulance would be appropriate.

How awful for your grandchildren, I'm so heartbroken for you, knowing what episodes have been like here, and they pale suddenly and I'm thankful that my husband has only broken down crying during christmas. I thought that was awful for everyone, but I wish I could just hug you now after what you have been through.

Tille
 
Reading your post has brought tears to my eyes. How I feel for you and your family, it is heartbreaking. You have some hard decisions to make, but, remember you didn't ask for this job of being a caregiver, so whatever decisions you make, you know you are trying to do the right thing for him. Do what you have to that is best for all and stick to your decision, don't wonder if it is right or wrong, there is no right or wrong it is just what is best at this time in his life. Good luck and know we are all here with you.

I am with you on your sentiments for the past year, it has been a horrible one.
 
Oh sweetie I am SO sorry! I don't have anything new to add to what everyone has already said. I totally agree that calling 911 is the appropriate action in a case like that. He gets needed medication, and you get some respite time! Also.. it sounds like you have anti-psychotic medication on an "as needed" basis? Glen took his 4 times a day, but then I was told he could take a certain amount MORE if I knew there was something stressful coming up (like extra family being around) or as needed if there was an episode we didn't see coming! I think a long talk with his neurologist, or better yet with a psychiatrist that has an interest in neurological disorders (our neurologist found one for us) is in order. Hope things are settled down for a while anyway!
 
I was so sorry to read your posts. But, I think you should truly call 9-1-1 if you get to that type of situation again. He is putting you and everyone else in danger and they can sedate him. I would suggest checking witha psychiatrist along with consulting with the neurologist again. It sounds like he was manic. Wish I knew something to help. Sening you a hug, Kim
 
Mary how are things now?
 
Hi Tillie,
Thank you for asking. He has calmed down with the anti psychotic drug, but his mind is bouncing all over the place. He does remember all he said and did, but doesn't believe that he did anything wrong. I am talking to a social worker tomorrow to get an "exit" plan in case he does the whole breakdown manic thing again. I am still feel like I am at my wits end. Hopefully this week will get a little better with some advance planning. I also have to get him a hospital bed, but he is refusing one unless I can fit in it with him. I of course, will get one that we can access him on both sides. Again, thank you for asking. Mary
 
You are in my prayers Mary. Sending you a hug, Kim
 
Thanks for the update Mary I've been so thinking of you the past few days!

Same here, after outbursts my PALS remembers them, but has told me things like MY behaviour during his tantrums was unforgivable! (he doesn't see them as tantrums of course)

I do hope the meds keep him at a place you can manage, it's so distressing to see our loved ones deteriorate like this. An exit plan is essential, and I would love if you can share any of it with me either here or by PM as it could be helpful for me as things progress here.

I got mine on an anti depressant about 6 weeks ago, and his outbursts have settled significantly, but now he cries a lot. To some he may seem more depressed, but really I think he is expressing more 'real' emotions as he does talk when he cries.

I curl up in the hospital bed with my husband when I can get him in it, but I couldn't possibly sleep in it all night. They are so wonderful if you can get your PALS into the things!

Please keep us updated, we truly feel for you and are thinking of you
 
You said his mind is bouncing all over. I was that way for a while. The dr., phychatrist, said I was having racing thoughts. He put me on Lamictal and they stopped. I'm sure there are other meds that work also. I have been so much better since then. You feel like you're going crazy trying to keep up with all of those different thoughts. You have my prayers.
 
When you think you have it bad someone has it worse. That sweet Mary is you. I am in awe of you for having taken care of a vent patient for 5 1/2 years. I know the hard work, energy and dedication that takes. My heart goes out to you with all the emotional turmoil you are going through. Please know that we are all here for you. Keep us updated as you continue on the journey/nightmare.
 
WOW, you are a bunch of great people.
I made some plans today and feel much better because of them.
#1 ) I am working on getting our insurance to approve a nurse practioner that can come out to the house every week or so. She could asses the meds and answer questions, change out his traech every 3 months, change out his peg tube every 6-12 months, and I won't have to gather him up and bring him places.
#2) Even though I don't like to disappoint him, I am taking a stand. While I will ask his opinion on all drugs and treatments, if he is throwing a fit, or denying his drugs or food, I am exercising the health power of attorney that he granted me when his mind was better, and making sure that he is taken care of.
#3) the other option would be for a palliative doctor to come to our house 1x a month - I almost thing that is too far apart because his mental state has deteriorated so rapidly lately.
#4) I ruled out putting him in a nursing home for now. The ALS clinic in town, helped me look and there are only 4 places in our state that could take him. The nearest being about an hour from our home, and no where near any of the kids or his mother. I just can't do that to him, and if we are able to control his outbursts with the other plans, this could possibly work.

Debbie, I really don't have it that bad, so I don't want you to think too highly of me. My private insurance is excellent and it covers 24 hour nursing care, along with a nurses aide when I am at work. So the care doesn't fall just on me. Of course, working with strangers in your home is a whole other set of issues :) .
Thank you for all your support, I truly have leaned on the people in this forum for the past several weeks. I know you know what I am going thru, and I know that you understand.
Mary
 
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