Another rough night only worse than before.

White Crane

At 12:30 this morning I woke from a sound sleep because I heard someone yelling, "Help me! Someone please help me!" I rolled over and saw that my husband wasn't in bed. I found him in the bathtub with his arms hanging over the side of the tub and the water still running...and the tub starting to fill with water. I have no idea how long he'd been there and I'm crying as I write this. He was cold and his body was wedged between the shower chair and the faucet. There was no way I could get him up but I did cover him with towels and try to reassure him that I would get help. Why was he in the bathtub taking a shower at 12:30? I have no idea. I called 911 and told them we needed help. He didn't seem to have any broken bones so we didn't need an ambulance just the fire department to get him up. It took a good ten minutes for them to get here and it took them at least that long or longer to get him up. He was so weak he couldn't help. They had to put blankets under his arms and middle and physically lift him to his feet. My heart broke to see my husband in this condition and I can't stop crying thinking about it. They had me go downstairs and get the walker (which he normally doesn't use.) They were very gentle and kind to him and finally got him into bed. It took a while for him to settle down and sleep. I was still awake at 2:00 and finally got up at 4:30 and cleaned up all the wet towels and finished drying the floor. I just can't stop crying. I feel so alone and heartsick. He had fallen yesterday morning also but was able to get up on his own. I will call the neurologist office in the morning even though his neurologist retired at the end of August and he can't get in to see his new one until November. I'm praying they can adjust his medications to help him sleep through the night so we don't have a repeat of what happened this week. If not, I may have some hard decisions to make. It feels like we are living in a nightmare.

Brenda

M1

Brenda, what an awful experience. It does sound like you're at a turning point. I was afraid something like this might happen after the other incident. I'm so sorry.

Denise1847

I am so sorry Brenda. I can only imagine how horrible your experience was. We are living a nightmare and cannot wake from it.

Ed1937

Brenda, I can imagine how distraught you were, and are. I'm so sorry.

upstateAnn

I am so very very sorry. An incident like yours were what compelled us to put my dad into memory care. His doctor said he would refuse to release him from the hospital unless we had arrangements made. We made them. He was safer…. I am not looking forward to experiencing this again with my DH.

Rocky2

(((Brenda))), My heart goes out to you and your DH. This incident was clearly very distressing for both of you. I'm relived that you had gentle, capable first responders and there were no injuries. You may indeed have some difficult decisions to make. You are a great caregiver and I have no doubt that you will do what you believe best for your DH. Loving deeply also means we grieve deeply at times. I will be praying for you for wisdom and strength.

Tom

ghphotog

I can only imagine how heartbreaking for you to see your DH who is now in this condition.

Beachfan

Brenda,

I am so very sorry for what you are going through. I had DH at home for 11 1/2 years prior to placement. I can count on one hand the number of times he woke in the night, disoriented, and wandering in the house. He fell, occasionally, as well, at night or during the day. These occurrences were few and far between, and minor in nature. Each time, I was left frightened, exhausted, and heartbroken. I can’t imagine what you are going through. I am praying for you- - for stamina and strength; you are so brave and loving to soldier on with this caregiving. Please look out and care for yourself.

Joydean

Brenda sending virtual hugs to you! So very sorry for what you and your husband are going through at this time. My dh’s doctors told me to add melatonin to his nightly meds and that has helped. Don’t know if that would help your dh but it has helped here. Wishing you all the best!!! You are both in my prayers!

Joydean

Forgot to say at first I added one pill and that didn’t help much so doctor told me to give him 2 and that has worked!

Quilting brings calm

I’m sorry you’ve reached this stage. I know the not sleeping at night is an issue. He can get into dangerous things while you are asleep. However dangerous things could happen in the daytime too. You can’t watch him every minute as you have to go to the bathroom, cook, etc.

ImMaggieMae

Brenda, I am so so sorry that you had to go through that. Is there any chance of getting an “urgent” referral for a neurologist? It’s so darn hard these days to get into any type of specialist. When my husband was bouncing off the walls all night a couple years ago, it was a trip to the ER and a very good hospital pharmacist and psychiatrist who got him on medications that keep him sleeping soundly all night. It’s still working very well. We’re dealing with sundowning in the late afternoon and UTI’s lately, but at least he’s sleeping 8 to 9 hours at night. That week long hospital stay was before we could get into a neurologist, who had an 8 month wait. I was surprised at the difference the right medications can make.

Jgirl57

So sorry you are going through this now. So glad you can cry on our shoulders . Sending hugs…..

Mint

Hugs to you and your husband.

gampiano

Dear Brenda,

I am so very sorry that you and your husband have suffered through this shattering ordeal. You must be heartbroken, and the trauma and aftermath are lingering and exhausting. And then, after the crisis, we gather ourselves up and clean , and tidy at all odd hours of the morning, sit down and try to compose ourselves, and reach out to our community.

Recently, After my husband , a gangly guy, 6'2", wedged himself between the closet and the bed after falling , i knew he could never sleep upstairs again. I don't have a bedroom downstairs, and only have a half bath, but we make do, and its a lot safer. I'm sleeping on a couch perpendicular to his bed. is this a possibility for you? Also,maybe get a referral for palliative care services? I started out there, and ended up with Hospice, after a nurse came to evaluate. That was a bit of a shocker, as i didn't think we were at that point, but its helpful to have an outside , professional observation , and the social workers show up pretty promptly, and get things moving. They have many resources to offer, and they are very mindful of caregiver"s needs, and actually provide support in the way of respite, home health aides, Rx, and 24 hour on call nurse.

Im still not getting enough sleep, so the hospice pharmacist recommended something for DH, to give before bed. i'm picking it up tomorrow. They came to evaluate on saturday, and will have the rx on monday, Thats how fast they work. No more waiting for months to see a specialist. Hes never taken a sleep aid or anti anxiety med so im hoping this is going to work.

I hope that this is helpful , each journey is unique.. You have been very supportive in your comments to me, and i wanted to share .

Sending a huge hug,

Maureen

ButterflyWings

(((White Crane))) Gosh - I am so sorry for what you both went through. The blessing is he will forget, but unfortunately it sticks in your brain. Please don't beat yourself up, although I can imagine you feel so sad, traumatized, and downright helpless. You work so hard to keep him safe, and are doing such a great job.

As scary as that experience was, thank goodness at least he didn't have the hot water showering down on him and possibly burning him. Our water is too hot and this is a good reminder to adjust it somehow. I noticed this when DH overflowed the sink for the first time in a long time, this week. This is just an unbelievably rough road. We are here for you.

Ed1937

Water heaters should be set no higher than 120 degrees, preferably a little lower. Let the hot water run for 3 minutes, then check it with a thermometer.

Last Dance

I I'm so sorry for what both of you had to go through. My wife would sometimes get up and go out to the living room and just watch TV and I was always afraid that she would fall and get hurt, so I bought a little alarm from Amazon and set it so when she moved about 5 feet the alarm would go off and wake me up at least that way I could even be up with her for a while or get her back in bed. It is so hard taking care of somebody all day long and you're so exhausted at night time you just sleep so soundly you don't even hear them move hopefully you can get some medication that will help him sleep the night through.

Jo C.

There are not words sufficient; I am so very sorry.

J.

Kibbee

White Crane - Sending a hug your way. Dealing with a person who is experiencing frequent falls is very stressful and upsetting. As DH’s neuro-cognitive disorder progressed his ability to walk declined but his lack of cognitive bandwidth kept him from fully realizing his deficit and adjusting accordingly, ie using a walker, asking for help, etc. This state lasted about a year and he had quite a few falls during this time. He’s a tall guy but I was able to get him back up on his feet. I watched videos to learn techniques and managed OK, but it was not easy. The worst was the day he fell 4 times, ugh. I look back in amazement that I never had to call the fire department for a lift assist, although I did one time call a neighbor for help.

Eventually his condition progressed to the point where he no longer even attempted to stand and was full-time in a wheelchair. So the falls from standing have ceased, but I have to keep an eye on him when he’s in the wheelchair because if he slumps too much he can slide right out onto the floor.

While I hate to see him bed and wheelchair bound I know it keeps him safer and, frankly, in makes caregiving easier and much less stressful.

toolbeltexpert

Brenda I so sorry this happened I know it's heart breaking seeing our lo in such a shape. You are an a1 caregiver and hopefully you can get something that will help your dh. Praying for the help you need.

Stewart

White Crane

Thank each of you for your kind and helpful responses and for your prayers. They are all greatly appreciated.

I called DH neurologists office on Monday and the best they could do was to update his appointment from November to October. Not much help there. The nurse told me to call his PCP and have him checked for a UTI and any other condition that might be contributing to his behavior and weakness. She also said to try melatonin which several of you had already suggested. The PCP office got him in that same afternoon. I had written a detailed note for the Dr. but he still said he didn't know why neurology wanted him to see him and didn't know what he was supposed to do. I told him they wanted him to see if some other condition was causing his behavior. He said he could check for a UTI and have some basic bloodwork done. Then he said his girls would take care of it and abruptly left the room. So that was the help we got. I bought some melatonin and it has been helping him sleep all night but he is very confused when he first wakes up. His legs are getting weaker and he is a fall risk. His bloodwork was okay. I'm doing better since getting some sleep.

Thank you all for being here. You have been more helpful and supportive than his doctors.

Brenda

frankay

You might find some answers with the UTI results. Two times now my DH's legs just stopped working. Had trouble standing , couldn't figure out how to walk, very weak and a fall risk. Had no other symptoms, but postive UTI. Got treatment and his legs started working again, not great but he could stand and walk a little. Those UTIs are crazy.

M1

His girls, indeed. That's so insulting to everyone involved. The fact of the matter is that they have little to offer. Brenda, have you thought about calling hospice?

White Crane

The doctor's office called late this morning. DH has a UTI. I will pick up a Rx this afternoon and am praying it helps. He was so confused this morning that he barely knew anything and his legs weren't working right.

frankay, this sounds like the same problem your DH had with is legs when he had a UTI.

M1, I had thought about having him evaluated for hospice if this didn't get better. I am praying I won't have to do that now.

Brenda

M1

Not much to lose Brenda. We're really close to that as well. My partner has rallied somewhat this week with my being there every day. That's the forseeable future. I go in the mornings, help her eat lunch, stay as long as I can, come home and go to bed.

ImMaggieMae

White Crane, my husband has just recovered from another UTI after a switch from one antibiotic to another which he finished this morning. It’s interesting that you mention the leg problem. My DH had that with this last infection. He was shaky and barely able to walk on his own. We had to use a wheelchair to get him into the ER and move him around. (We needed another urine sample and I wasn’t able to get one at home and the only place around here that could use a catheter was the ER.) He has never been in a wheelchair before. Within a few days on the new antibiotic his walking was back to “normalish” again but it was very frightening to see him so very unsteady on his feet and not a symptom that he’s had before with a UTI. I do see some progression after this last episode but he is certainly way better than he was a week ago. I hope you have similar results.

frankay, it’s interesting that your DH had similar leg problems with the UTI.

gampiano

Hello Everyone,

WOW, my DH also had the same problem with the most recent UTI. His legs literally locked up and he forgot how to walk! Also had Parkinson's like tremors from head to toe. Fell 3 times, had to be moved to first floor living and that' s where we are now. Although he is improved after a few weeks, he definitely has regressed and I called Hospice for an evaluation, truthfully not expecting that he would meet the criteria for admission. We spouses are too close to the situation and need the eyes of trained professionals to assess. The team was here for 2 hours and recommended Hospice. I'm so relieved to be receiving these services. Most people wait too long, and miss out on the amazing benefits they offer. Dying is a process, sometimes a slow one. Get the help you need . The care and support are there for you.

Sending encouragement,

Maureen

P.S. Tomorrow, after the nurse visit, an aide is coming to give DH a lovely shave and manicure. Next Thursday, he will have a massage therapist here for 45 minutes. They also offer the caregiver a massage. The social worker called and i'm getting a volunteer to come sit with Dh for 2 hours twice a week for starters so that I can leave the house. Side rails are arriving next week in case we need them. There's a lot more, this is just the basic stuff.

A new development which the nurse indicated was coming... swallowing issues. They were so spot on with their assessment.

ImMaggieMae

Isn’t it strange that 3 of us had recent problems with our spouses walking and leg weakness with a UTI? I had never heard of this symptom before. After being barely able to walk a week ago, he’s back to walking around on his own now that the UTI is over. Are there others here who’ve experienced this?

Ed1937

My wife never got that bad, but the UTIs always caused increased problems with balance and walking, and usually increased confusion.

Nowhere

I’m so sorry this happened to you and your husband as you’re a team. I wonder if he needs a lock on his bedroom door so that he cannot leave the bedroom at night? How else can you get the sleep you need? Hoping you regain a sense of peace and control in caring for him and keeping him safe.