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By Witsend On 2014.08.28 22:57
My husband has been in the hospital several times recently, and now he's in a skilled nursing facility. Since he's been there, his dementia has gotten absolutely terrible. He's had a total of about 10 minutes when he's lucid. He falls there every day, has the worst safety record ever. I don't know what the end game is here - when he'll be out. All I know is that I am, I don't know, paralyzed. I feel like I'm walking through mud, I started smoking again, I've gained 30 pounds in the past few months. 99% of my attention and time are spent on my husband, and tonight he called me a bitch for the first time in our 25 years together. The funny thing is that tonight was one of the times when I WASN'T a bitch. He's so gone. His mind is gone, and he's wheelchair bound now - even at that, he falls out. I walk around like a zombie. I've been on antidepressants for a long time, and this doesn't feel like normal depression, it just feels like I'm dead but alive. When he comes home I'll get a private caregiver, and we plan on moving into assisted living together in a couple months. So I should be packing up our huge house and getting things ready but I cannot move. This is terrible. I guess my question is, can dementia very suddenly get way, way worse? I know it's worse because he's in an unfamiliar situation, but this is really, really bad dementia. Thank you for listening.

By LOHENGR1N On 2014.08.28 23:18
From what I've read dementia doesn't suddenly change, that said have they changed his medication scedual? Have they added any medication? Sometimes with many patients to care for places will "manage" patients with medicines. I'm not saying this is the case but it does happen. A friend of mine was in a nursing home for rehab after a knee operation an was going stir crazy he jokingly told a nurse if he didn't get out soon he'd go mad. She asked what he meant he pointed to an iv and motioned as if to loop it around his neck. She reported it they sedated him , putting him in the fetal position on the bed for three weeks without consulting his neurologist before sedating. His neurologist was livid! I'd check to see his meds there and when they are being administered.

By umajane On 2014.08.29 00:19
I am so sorry to hear how you are feeling.
Do you have family nearby or someone you can talk to. Do not worry about your smoking or weight gain right now....just try to take it one step at a time and hopefully you will be moved into assisted living soon. Try to get all the help you can.

By VioletV On 2014.08.29 09:42
Wits,
This sounds so frightening and exhausting. I don't know if this is possible for you, but a friend of ours used a senior move manager (https://www.nasmm.org/find/index.cfm) to help her with a very quick downsizing and move after her husband had a fall and a brain injury.

Do make sure to have your husbands own neurologist review the current meds schedule. They could be giving him something that makes his cognition much worse.

VV

By Freespirit On 2014.08.29 11:54
So sorry you are going through this! A couple of things came to my mind as i read your post, so I'll just throw them out here as food for thought.
1. I'd rule out a possible UTI, or any other infection
2. Being in unfamilar surroundings can increase dementia symptoms, or cause delerium. There's a difference between dementia and delerium.
3. I would MOST definately check to see what kind of "sedative" they gave him - only two are really considered safe for PD: Quetiapine, and Clozapine.

By Mary556 On 2014.08.29 15:53
Peace be with you, Witsend. my PWP had a similar experience recently. She was four overnights in the hospital then six weeks in a SNF/Rehab facility. the first day after her transfer my mother reached a new level of confusion that I had not witnessed before. her thoughts were so disjointed and rambling, it was very upsetting. "narration of a dream that has no plot" is how a family member described her words. Our good news was that my Mom had significant improvement and was able to communicate coherently again after a Speech Therapist worked with her.

What Al said, you need to ask the SNF for a list of your husband's current meds. It is not unusual for mistakes to be made. During her recent hospitalization my mother was given double her usual dose of Seroquel (50mg instead of 25). That error was perpetuated at the Rehab facility because they followed the hospital discharge instructions. the hospital rep told us that discharge papers follow the patient and are not given to family. We had to go through the medical records department using my father's power of attorney to get a copy. My Mom was two weeks into Rehab (and not making good progress) before I discovered the error. During my PWP's previous hospitalization in January, she was only given half of her dose of Sinemet, even though someone from the ER had gone over all her meds with me. We cannot be too trusting. We need to be pro-active.

Because of your husband's frequent falling and confusion, I was thinking UTI also. It would be good to ask his PCP to test for that.

Best wishes and prayers for you and your loved one.

By moonswife On 2014.08.29 23:42
Witsend,
God help you Al is spot on and so is Mary. My husband had his knee replaced, the let me administer RX in hosp and all was fine until they sent him to rehab facility. They would not let me be there after 10, so the 1st night I made sure he had PD Rx and left. They called me at midnight and said he had fallen on the bathroom floor. NOW HE WAS STILL USING A URINAL AND BEDPAN??? I asked him why he got up and he said when he asked for the urinal they told him to go on his own. No cane, grab bars or call string he could reach. Was supposed to be non-ambulatory for 2 more days, except with PT present. I left and went home and came back at 7. He said someone came in his room and went through his personal possessions and then they never gave him the cracker or cookie he eats before he takes meds (nausea preventative). In fact they gave the wrong meds. I had him out of there withing 4 hrs with help of friend the did the calling to get a hospital bed, platform walker and hoyer lift for my house. A Dr. that certifies they are a good facility checked the hosp discharge papers and the Rehab Med record transcriber gave nursing staff wrong instructions. I Called a private ambulance and when they arrived the Head Nurse asked why and I pointed to the Dr. inspector and said ASK HER? We went home, Dr. inspector sent all necessary medical professionals to us and guaranteed us the facility would no longer be a choice of Kaiser Permanente. Be the ONLY ADVOCATE YOUR LOVED ONE WILL HAVE. Everyone else seems to just want their paycheck. Witsend, the meds are most likely the problem.

By Witsend On 2014.08.31 10:13
Thank you all for your responses, and especially your willingness to help. This forum is a lifesaver for me - I know I'm not alone. I had my husband checked for a UTI or other infections as soon as he checked in, and I have followed his medications and their times of administration. His meds are fine. Just in the last day, his agitation has decreased, but he is still confused. He called me to come to the nursing home late last night because he said the car needs gas and he couldn't get home from work. When I got there, I asked him if he remembered where he is and he said no. So I told him he was in the hospital and he said "Oh. I should go to bed then." That was the easiest it has ever been to bring him back to reality, if only for a second.

By Witsend On 2014.08.31 16:51
The next morning I was told he got out of bed immediately after I left the nursing home, and wandered all night. So I guess the brief moment of clarity was actually briefer than I had hoped.

By Daybyday On 2014.09.04 14:12
Dear Witsend,
Have been thinking about you and hoping things are getting better for you. It sounded like everything was going from bad to worse. I know exactly what you mean when you say you feel like you are "walking thru mud" or like a zombie. I can so relate as many others can. I kind of feel like I have been in a trance ever since finding out DH had PD. I remember my mother always dreading my dad might get this disease because she had a friend whose hubby had it and she said her friend was always having a hard time. Luckily my dad died @ 75 ten days after a stroke. I feel like I have a lot of fear about the future especially when reading some of these posts. I will continue to try and be strong. I did have one question....where is it you go to find private caregivers when needed?
DH had an incident 3 days ago and somehow cut his head, freak accident, while pushing the garbage can up onto a cement sidewalk. He was bleeding so badly from his forehead that I rushed him to the ER. He's ok now but has a lot of doubt now about his ability to help around the house/yard. His confidence in himself is compromised. It's not easy for him to feel more dependent on me.

By moonswife On 2014.09.04 22:01
Witsend, If they reported "after you left he wandered around most of the night" did you respond, "Oh, I guess he was looking for me for one last good night smooch!"

By Witsend On 2014.09.05 17:49
Aw, that's so sweet, moonswife!

By Witsend On 2014.09.05 17:54
Daybyday,

I was told today that my DH will need to be placed in a Memory Care facility. My heart is broken. I live in Southern California, and I looked at the internet for referrals to agencies that provide caregivers. If I may say something about your fears - one thing we know for sure is that this disease affects different people differently. You and your DH may have a very different experience. By the way, my DH was diagnosed 14 years ago, and we know he had PD at least 2 years prior to diagnosis. We had almost 14 great years together, despite all my bitching about him in this forum!

By Mary556 On 2014.09.07 08:08
Witsend, I'm so sorry that your DH will not be returning home now and understand how that must break your heart. I hope in time he may regain some sense of self and hope his cognitive function may improve at the Memory facility, if that is possible.
Please try to forget the hurtful words. That part must be very painful for you as well. He was not in his right mind and did not know what he was saying. That anger did not come from the one who knows you and loves you, but from a terrible illness.
Please, please take good care of yourself during these difficult days. I hope you will be able to quit smoking again after this relapse. It is difficult but you can do it.
You and your husband will remain in my thoughts and prayers.


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