A couple of firsts

Just Bill

Well the saga continues. My wife had about 3 days with very little sleep. She would not sit down. I made the house safe to roam like a big play pen and she was content. She would roam around the house talking to herself or her hallucination and simulate working. I would try to stop her for a moment and I would get a vacant stare and an urgent need to continue whatever quest she was on. The only hazard she had to deal with is the floor as she falls quite a bit. All day and all night for 3 days wandering, mumbling and falling. It got to the point it was safer to just leave her on the floor after a fall. She seems to be over that phase and the 3 days of no sleep have caught up with her and she is sleeping now. The firsts for me are; 1) I hired a caregiver to come over Mon and Wed from 9 to 1. I got lucky she is great she did her first day yesterday. She has a lot of dementia experience. 2) I have to now feed my wife by hand that is a first. 3) I had to change her for the first time. The up side is lifting her everywhere I am staying in great shape, she is 100 lbs of dead weight I am lifting into bed and off the floor countless times a day. Undressing and dressing someone with zero cooperation is quite the work out as well. The other upside is the last week or so has been very traumatic and it kicked off the survival mode in my brain and it actually feels pretty good. That feeling of absolute panic when you are in way over your head and there is no where to go for help and you have to suck it up and get whatever task is in front of you done. There is a feel good chemical that gets released after completion that I am enjoying now. She is clean, dry and in fresh clothes sleeping. All is good for now in this moment.

Just Bill

She got a whole hour of sleep. I don't know what to do. Imagine being underwater and you have the urgency to breath. That is the intensity of her desire to walk and fall. I can't stop her. She wont sit and she won't lay down. She has to get up. She gets about one hour of sleep per day. When I changed her this morning I noticed she is bruised everywhere from her constant falling. She is drug proof, all the drugs do is make her fall more. I can restrain her for short periods of time but all I can do is let her walk and keep falling. She is obsessed with something she is imagining she is doing. Nothing can break the spell she is under. Do I call 911 ? What would I tell them ? What would they do ?

PookieBlue

Just Bill,

You need help desperately. Please have her seen for her safety and yours. What you both are experiencing is unsustainable.

Joydean

Just Bill I wish I had an answer for you but I don’t. I can feel your concern and your pain.and my heart goes out to you and your wife. I can offer prayers! I hope someone comes in to offer helpful advice!

Ed1937

Bill, I'm sorry you are dealing with this. There is no doubt that you need help. She can only fall so many times before she really gets hurt badly, and there's no way you can keep that from happening. I was walking with my wife, going through the dining room when she fell. It was so quick that I couldn't grab her. She hit her head on the table or a chair, and was unconscious for several minutes. That was a very scary time, but they found nothing to be concerned about at the hospital. Please call her doctor to let him/her know of the problem. There must be some meds that can help in a situation like that. I hope they find something to help quickly.

gampiano

Bill,

Thank goodness you found a caregiver! It would be great if she could give you more hours. It is important to document these falling episodes, and for the caregiver to do the same. All that bruising might be questioned if you had to bring your wife to the hospital for any reason. I don't know much about cannabis, but it seems to have a mellowing effect. Have you thought about that as a possibility?

Also, one of my grandaughter's classmates had a sibling with autism, and her behaviors were very similar to your wife's. The family had a room for her with padding everywhere, and carpeting. i know that its a sanitary issue with rugs, but a plush well anchored area rug would mitigate the impact of falling.

Keeping both of you on my intentions list,

Maureen

Caro_Lynne

I wish I had an answer for you Bill, all can do is pray for you and your DW.

My house is on lockdown 24/7; latch on every door with outside access. It's the only way I've been able to sleep at night. LO's geriatric psychiatrist is the best thing that's happened to us. See him once a month to adjust meds as needed.

Let us know how it's going, we're all here for each other.

Denise1847

Hi Bill,

I would call the doctor and ask him if you should call 911. This would get her admitted and then they could work on meds that worked. She can't go on like this.

God bless you Bill.

Just Bill

I just met the elephant. I had to clean a #2. Once I got over the initial shock it went pretty smooth. I called the caregiver to cover for me so I can go to target and get a list of products for that purpose. Already the caregiver is a God send. Thank you all for your comments and support.

Denise1847

Bill, I was thinking about your situation. I am wondering if your DW has a UTI. That could cause very strange behaviors.

Ed1937

I agree with Denise. Possible UTI with no typical symptoms, also known as a silent UTI. Might be worth checking for.

Jo C.

Bill; she cannot continue on in such a terrible state; she herself is suffering. Being that there has been an abrupt change in condition that is persistent, she may well benefit from an ER visit to check all systems out in a "one stop shop" place for assessment and necessary diagnostics so to speak. If she needs treatment, then you will know for certain what and what is to be done rather than having things stay the way the dynamics have been, spiraling ever downward. (Other Member gave good input re the lack of sustainability as things are.) Certainly, the Ativan has not made much of a difference and she has not "graduated" to that tranquilizer; it is if anything, a bandaid which does not stick. It appears that is not at all the answer to what is present. It is wonderful that you have found an aide for a few hours a week, but from what you write, it appears more is necessary due to the changing presentation of the symptoms and behaviors.

Getting a thorough check up at a one stop venue such as an ER will give valid information on what or what not may be happening medically in her body systems if anything. If there is something that needs to be addressed, that would be very helpful. She could go to the ER either in a private auto or in an ambulance transport if she cannot tolerate sitting in a car.

Your dear wife may also benefit from a stay in GeroPsych where they can assess her on a 24 hour continuum, provide management from a Geriatric Psychiatrist with initiation/adjustment of meds in a way that may well be effective. She too needs peace and must depend upon someone without dementia to get her to medical assessment and care. I can well understand how overwhelming this must seem and I am sorry for all that is whirling about; I can imagine that you wish to handle all independently at home with your oversight; but it may well be much easier for the long haul if she gets to some of the medical services as mentioned. As said before; it is a quality of life issue for both your wife and yourself; her peace counts too. Best of wishes are being sent,

J.

ButterflyWings

I was thinking UTI. That is worth checking out, and may need to be via 911. I had not thought about what might be assumed if she shows up with all those bruises. APS would not necessarily believe you that they were due to her incessant falling. Thank goodness your new caregiver may be able to verify what you are seeing and saying.

I am SO sorry to hear this is happening to her and you. Until you can get to the bottom of it, keeping her from really injuring herself is key. Hospice brought me two long, very thick mats like gym mats when DH was falling. They were only for his side of the bed, and another area where he sat and stood up or paced a lot. Not sure if you can block off one room or a certain area to pad the floor for her (without it being a tripping risk) and maybe that would help you both?

Last thing, DH's first hospice nurse warned us that Ativan (Lorazepam, right?) has the opposite effect on some PWDs especially if given after noon. She said it is like sundowning on steroids. Wondering if she is reacting negatively to that med? Hoping you both get this figured out really soon. Yes, this is an emergency call to her Dr. and request that they advise you asap since neither of you can go on as is. (Welcome to the blue glove team. Let's hope it might be temporary -- sure sounds like a silent UTI might be the culprit).

easy23

I would take a trip to the ER and get her checked out. No harm in doing so.

Battlebuddy

Oh Bill, I’m so sorry this is happening. I remember when we hit that stage. All of those symptoms are pointing to late stage 6 . It sounds like it is sudden so definitely check for UTI.

But the falling can be that she is loosing the ability to walk. That would push you into early stage 7. You could try and get a Hospice evaluation at that point.

The not sleeping part is the killer. That can’t be sustained especially with you working. If It was me , I would call 911 and have her taken in for assessment and possible Geri psych stay.

ghphotog

Hang in there Bill. Maybe she's in some sort of pain and doesn't know what to do but move around. She might not know how to tell you. You need help. When my wife was in the rabbit hole it turned out to be a combination of incompatible medication.

Just Bill

I gave her 100mg of seraquel and 10mg of zyprexa. She is sleeping like baby. What a day. Her doses were too low and I thought they were too high. Her disease is progressing faster than the drugs can control the symptoms. The doctor said to use the seraquel to control her sleep. Use more dosages if you have to it is a fairly safe drug compared to all other antisychotics. I am still going to have a hospital check her out once she has a few days of good sleep. Thank you all for your prayers, comments and suggestions. Most importantly a place to go where I can diffuse my feelings of panic with writing.

ghphotog

Glad to hear things have calmed and hope you also are getting rest! Crazy few days for you.

toolbeltexpert

Bill I can't add anything but I am praying for you both

ghphotog

Just wondering about you and hoping everything continues to be calmer.

Ed1937

Bill, I'm glad things seem to be getting a little better. I hope it continues. You've had it rough.

Joydean

Bill so glad she is finally getting some sleep and hopefully you are resting too!

ImMaggieMae

Bill, I’m so happy to hear that your wife is calming down and finally able to get some decent sleep. Agitation is the big thing here as well, and when it increases or new symptoms appear it is usually increasing the antipsychotic or changing the timing or adding another med to calm things down. My DH has had a recent increase in agitation as well. It started with a stubborn silent UTI that took a second antibiotic to get rid of. He had bowel incontinence for 2 days that seemed to be one of the side effects. That went away when the UTI cleared. It’s mind boggling how much havoc a UTI can cause in a person with dementia.

Getting medications and their timing right can be challenging as well. The key is calming the agitation without causing them to doze off during the day, only at night. We had been doing so well here for about a year and a half but are now adding Trazadone once during the day for sundowning. Results are mixed. I wish you the best, Bill. I know how hard this is.

Just Bill

She got worse yesterday. I tried to get her to lay down on the couch but I caught her before she fell. She is not fully awake. She is running around the house in her mind based on her movements. I have her lying on a blanket on the floor. I thought she was going to pass last night or this morning. Since she didn't I don"t know if she has an hour or a month left of life. She has been evaluated and qualifies for hospice service. It is 100% covered by your insurance or medicaid. All the stuff is arriving today; new primary physician, new meds, a hospital bed, a nurse or two. If any of your spouses are in late stage 6 or 7 do not hesitate to call hospice care. The one I am using is through St. Jude hospital. I'll keep everyone posting as things develop. Thank you all again for listening to me bitch and be available for support.

Jo C.

As an RN Administrator, I am familiar with St. Jude's in Fullerton. Considering the mixture of meds your wife was put on, that may explain the most recent changes in her. It is really good that your wife will have professional medical people seeing her in person in real time; that may well make a big difference.

Since the Hospice nurses will be coming on board; please ask them to do a urine test to rule out a UTI. Hospice does indeed treat infections such as UTIs, pneumonia, etc,. when the patient is not moribund at actual death's door. Hospice may NOT by law hasten death by performing any action or by not acting when a patient has medical needs. That is the law governing Hospices. They make the days left for the patient as comfortable as possible under the circumstances. You may see the meds being adjusted again, and hopefully; clinically, a UTI being ruled in or out.

Many of us have had our LOs greatly improve under Hospice care; sometimes to the point of Hospice no longer being needed. Even though your wife is on Hospice; they do indeed treat infections. UTIs can cause tremendously over the moon behaviors in a person with dementia; it can be very dramatic; once treated, the behaviors usually calm considerably.

You will have an RN who will see your wife at intervals and a bath aide two to three times a week; that is a great help. It would be good to continue with the part-time aide you hired if you can; that too will give a break. Hospice MDs do not usually visit routinely; some will come to a home once; others do not. It is the RN that communicates with the Hospice physician and makes recommendations to be considered and receive medical direction. Hopefully, you will have an RN who is familiar with caring for persons with dementia. This should be of great assistance and give the both of you some breathing space.

My LO was new on Hospice and had dreadful behavior issues; I strongly suspected a UTI as each time my LO had one, the behaviors were gosh-awful. The first RN who came out decided since my LO was on Hospice my LO did not need to be checked for a UTI. VERY, VERY Wrong. The second RN who was to be our permanent one, coming in assessed matters and related that my LO needed to be checked for a UTI before I even had to ask or insist. That check goes beyond just a simple dipstick as the error rates for those are very high. There was indeed a "silent" UTI. Once treated, my LO's behaviors calmed quite considerably which was very helpful for my LOs quality of life. Never, never minimize the power of a UTI for causing behavioral issues or downturns.

You will also qualify for Hospice short term Respite Care in a facility at intervals. This can be good for the caregiver to recoup some sleep and energy. Hospice will continue to follow when a patient is in facility care either for Respite Care or on a permanent basis.

I so hope the Hospice service will be very helpful and bring relief to both your dear wife and yourself; hopefully it will make a positive difference in multiple ways.

J.

Just Bill

I was very impressed. Once they verified insurance they were here in 20 minutes. The nurse did a very thorough work up. I told her about the UTI and she made a note in the file. There is no way I could make my wife as comfortable as the hospice care will. I have a very good feeling about this. I feel I am doing everything that can be done to escort her off the planet as comfortably as possible. Thank you Jo C. for your no nonsense responses. You and a few other people (Marta , M1 and a few others I apologize if I have missed) in the medical field have helped help me see how out of my depth I am in this stage of her disease. Calling in the pros is a no brainer. And the best part is I kept my promise to her she can die at home.

Just Bill

It is amazing. I called this morning and she already has access to a physician 24/7. They already have a new med profile and fully detailed battle plan. It is too bad the price of admission (being terminal not $) to this service is so high. It sure would have been helpful if a version of this service was available at stage 4.

Jo C.

So good to hear, Bill. People are always so surprised how fast Hospice works . They usually have everything in place the same day or at latest, early the next day - it is amazing. This should bring so much to you and your dear wife and make a difference; it is not all on your shoulders any more. Hospice is also for the family/caregivers as well as the patient. You will have 24 hour contact if necessary and that is a huge help in so many ways.

I agree help of this nature could do so much and bring so much earlier on in a person's healthcare needs; but alas on that one. At least the feds have permitted this at this point; so many needing so much with a variety of different diagnoses. I have very deep respect for a good Hospice and really learn to love the dedicated staff who give so much of themselves. May this be a true blessing; we will be hoping for the very best for both of you.

Let us know how it is going; we will wait to hear and we care. You are no longer alone.

J.

Ed1937

Bill, I'm glad you were able to get hospice involved. It's amazing how much they can help. People don't realize how good they can be unless they have seen it. My brother was in hospice for a few weeks, and hospice seems to always bring great experiences from others. I wish you both the best.

M1

Overall this is a step in the right direction Bill. At least you and she can both be more comfortable. That it the goal......I'm relieved for you.

Jgirl57

Just Bill, it sounds like hospice can give you that support to give you a moment to breathe and process the next step on this journey. None of this is easy.