Dementia or Drugs?

So, my mind rolled all night wondering does Mom now have Dementia or is it a drug or something else? We owe it to her to investigate and not just ignore these symptoms -- I cannot do that to my Mother -- I wouldn't want someone to drug me and cause me to appear I have dementia when it was really a drug!

So, 6:30 am I send the following email to the Administrators and nurse at the facility:

This has rolled in my head and I got up this morning and did more research.

Folks

I’ve been worried about my Mom’s confusion ALL NIGHT. I’m an analyst at heart and have spent about 30 years (my entire career) having to research and learn all kinds of things – so I have a LOT of experience at researching and analyzing and learning. I also know my mother – I know her well and so does Sister.

I just read that early studies of Remeron did note that the drug did cause Dementia in some patients.

Until Mom was started on Remeron WE did not see the confusion that we (mostly Sister since I’m out of town) see now. I understand that you all stated you experienced some confusion – I understand that – but not to the level we see now.

I saw my Mom get TOTALLY confused one evening back in November – and it was COMPLETELY a reaction to some cough syrup her doctor prescribed for her. Once that got out of her system – next morning – she was back to normal. So I have SEEN drugs throw her into a tail spin.

I realize that what we are seeing may in fact be some dementia – I’m accepting where we are with our mother and the various things we may experience. I do accept that.

However, WHAT if Remeron or carbon dioxide IS the cause of her confusion? We would be doing that woman a TERRIBLE INJUSTICE if we did not figure that out – wouldn’t we?

Is oxygen still required 24x7 for Mom? If so, why? She didn’t need oxygen before her lungs started filling with fluid from the heart failure. When she was admitted to Regency she still had fluid in her lungs. Does she still have fluid in her lungs? Does she need the oxygen full time? WHAT if there is a build-up of carbon dioxide in her lungs causing the confusion?

What are the ramifications to stopping Remeron for a few weeks? What do we have to do to get her blood gases checked?

Please help us out with this and help us at least investigate whether there is something causing the confusion.

Thanks!

Well, what do you know -- Sister goes by facility at lunch time -- Mom is very confused again. Talks to the Nurse Practitioner and last Monday they did check Mom's blood gases and found it was at 35. Normal is 20-29. "Hypercapnia" is when the CO2 level is greater than 45 and that is life threatening! A little more about Hypercapnia:

* The blood contains carbon dioxide, a "waste product" of cellular metabolism that is exhaled by the lungs at the same time that oxygen is taken in. The normal concentration (partial pressure) of carbon dioxide in the blood is 40 mm Hg. Hypercapnia is when the carbon dioxide level goes above 45 mm Hg. (though it usually needs to be higher than this for symptoms to occur). * Hypercapnia commonly occurs in severe Emphysema. Oxygen given to patients with Emphysema may reduce their ability to breathe, resulting in Hypercapnia. This is why exact doses of oxygen are usually figured out for those with Emphysema so that they receive neither too little nor too much oxygen. Note: if a patient is actively short of breath, never withhold oxygen from him.

Now -- note that Mom was classed as having COPD but she was NOT having breathing problems prior to December 30th. As far as we know, the oxygen level has not been adjusted since December 30 and note that above information states oxygen level must be set just so -- not too much and not too little. Really? Wonder who is monitoring that??

So the Nurse Practitioner does 'assessments' 3x week -- I think that is what Sister said and then the local medical conglomerate comes in on MWF to collect blood for various tests. So, if they check Mom's blood gases again it won't be until tomorrow.

Also learned that Mom has on same clothes for the 4th day now. Could be she is requesting those?? So, I called the asst. Administrator this afternoon and asked about blood gas check -- results of nurse's assessment and about clothing/bathing.

The Nurse Practitioner has decided she wants to assess Mom tonight -- sometime. Maybe even wake her up to assess her. She said Mom may have had Dementia (D from now on) for some time but able to control it or catch herself and now not in her normal environment she cannot catch it.

So -- how about being at home? Time now to research IN HOME CARE SERVICE PROVIDERS. Find our options, check the companies and people out and compare company and pricing (not that pricing take precedence -- it doesn't but we certainly have to be able to afford it). Then assuming we find suitable care -- will Mom agree to someone in the house with her? This could take some time, but we want to do all we can and it is would be better if she could be in her own home but it depends on whether she will be cooperative or not. This is tough.

This is so not where this woman wanted to be...............But......God has a plan and we will survive and learn. We can only try to do the best we can for her every day -- one day at a time.

To Be Continued................................

Cause of Confusion?

I emailed the facility administration this morning about that shower schedule. They have made a "process improvement" to better monitor and audit the schedule YAY! So, Mom's getting a real shower today and then is scheduled for every Tuesday and Friday -- bathing between showers.
The CNA approached Mom before lunch today about a shower and Mom responded that she didn't want one. The CNA got the DON (Director of Nursing) and she talked to Mom and again Mom said No. The DON said "your daughter wants you to get a shower" Mom responded,"I don't want one, I can make my own decisions and I don't care what she says". Well, now...hmmmm.......

We were also informed that the urinary analysis came back negative. Hmmmmm. So why is she confused? Mom didn't have this confusion prior to going into the rehab facility. She was naturally somewhat confused but all that was normal considering what she had been through and slept through in ICU and the hospital. She exhibited real confusion ( and delirium per her roommate) on her third day of taking "Remeron" -- an antidepressant. We asked the nurse then to STOP the drug but she suspected a UTI being the cause of the confusion, not the Remeron.

Well, since there is no UTI -- we must suspect the Remeron. So, I emailed the administrator again and asked that he investigate this with the Doctor and maybe Remeron needs to be discontinued. We don't want Mom being so confused -- and drugs can really play havoc on the elderly.

Man -- this is a full-time job to keep track of everything that is occuring with your parent in one of these facilities -- but also demonstrates why you HAVE to be very involved. Otherwise, these folks -- each nurse, therapist, etc -- look only at their schedule and muddle through their day -- they would continue current actions and those actions could drastically change the outcome of the elderly patients.

Well -- talking with a friend this morning about this confusion and lo and behold, she is going through something similar with her mom! Found out that

a build-up of carbon dioxide is likely in elderly that are on oxygen and have heart issues because the body cannot expel that carbon dioxide from the lungs and a bi-pap machine at night can take care of that and will completely clear up the confusion!!

So, I emailed the staff (administrators and nurse) about checking Mom's "blood gases" to ensure she does not have a build-up of carbon dioxide from the continuous oxygen! This email was sent to them before noon today -- hopefully getting this blood test won't take the week that the urine analysis required!

Sister went by this afternoon and Mom was doing good -- clear minded and even conducted some business. Then when they were leaving the dining room -- Mom says, "I need to use the bathroom before we head home." Sister guided her back to her room and she went to the bathroom. Mom's roommate told Sister that Mom gets real confused at nighttime. Sister asked if it was after any particular medicine, and asked if roommate could see if that might be the case.

What about drugs and the elderly? How much are these drugs doing to an elderly person's brain? How do we ensure that something that is prescribed to an elderly person is not making them confused? Think about how awful this would be and what path this could put a person on!! How do we prevent this?

Unfortunately not so. Mom came out of the bathroom and was very confused and started talk about needing her purse and coat. She again brought up about not staying there and about going home. During this Sister said some nurse/aide came in and asked if Mom had on her shoes and then came back and asked her roommate if she had on her socks. The roommate turned to Sister and said "see why we're crazy". Soon they brought in the dinner tray and once Mom started on that Sister departed.

So many feelings and thoughts about this journey. So difficult and you are faced with so many decisions. I know how difficult this is for me and for my sister and we are so thankful we each have the other to help in this -- but, Lord, what about all the elderly that don't have family involved?

I never wanted to see my Mom without a clear head -- she never wanted to be 'confused' or have Dementia. But, there IS a plan and through this we all learn much and our faith gets stronger.

One day at a time.

To Be Continued....................

Third Week of Rehab

Mom made it through this week and didn't refuse any therapy and "did much better" according to the head of therapy. They were able to get her out of her room and even doing some rehab in the rehab room with the other patients. The therapist said she did get confused once when getting ready to leave that room -- she thought she needed her coat and shoes.

Mom finally was going to get her hair done on Monday -- but then the facility's boiler had broke and they were without hot water! So, that got rescheduled for Tuesday and sure enough -- she got her hair done! YAY! She looks like Mom a lot more now -- still has some hollow eyes but looks better.

We learned on Tuesday that some virus was running through the place and everyone was being restricted to their rooms. Lots of staff were out with the stuff too. Sister noticed on Tuesday that Mom's floor was filthy around her bed and she got her a clean sheet. The roommate mentioned that she hadn't known their sheets to be changed since she came in a week or more ago. Mom had not been cleaned up either and had on the same clothes from Saturday!

So we sent an email to the facility administrators on the following items:

1. The Director of Nursing stated yesterday evening that they were going to discontinue the “booster” dose of the antidepressant they were giving Mom to help her sleep as this appears to be the cause of her confusion and drowsiness on Sunday and last Friday – that is good news!

2. My sister spent some time yesterday cleaning up Mom’s area while she was getting her hair done as both her bed and floor around it were filthy. I noticed that on Sunday as well. We realize that you are struggling with staff illness/shortages, but cleanliness is very important – especially when you have a virus going around. Mom’s roommate noted to my sister that as far as she knew neither her nor Mom’s sheets had been changed since she came into the facility!! I know I personally changed the sheet that lays under Mom’s butt on Saturday myself as it was wet and soiled. My sister said she has done the same multiple times since Saturday. This type of negligence can easily lead to infections and disease – especially in the elderly with low immune systems (and when combined with lack of regular bathing – see #4 below).

3. Last night my nephew and fiancé were in with Mom during dinner time and they noted she had “Glucerna” to drink. That is for diabetes – isn’t it? We questioned this note on her chart earlier and were advised that her sugar was monitored and it was consistently fine. We have not been aware of any diabetes food/treatment prior to last night. Can you elaborate as to why she was given “Glucerna” and is there in fact an issue with her sugar?

4. Yesterday Mom was still in the same clothes that were put on her on Saturday. As best we can determine – she has not been bathed since Saturday morning. Sister inquired about this with the nurse last night and she said that everyone is showered twice a week and sponge bathed the other days. My sister noted with the nurse that Mom had not received a shower since she had been there – we are aware that Mom turned down a shower opportunity last Friday. The nurse checked the “book” and did not see where Room 25 was on the schedule at all. So, it appears that Room 25 is missing the scheduled shower opportunities? The nurse said she would correct that and would note not to get Mom’s hair wet ;-) THANKS! I guess our concern here is the number of days Mom has been in the same clothes and without a bath and if Sister had not had this discussion, apparently Room 25 would not be on the scheduled list at all. L

5. Along with #4 – we were aware that Mom had a bit of a sore on her butt in the hospital and we noticed Saturday she was complaining a lot about her butt hurting her. If she has not been bathed since Saturday and in the same clothes – we assume same pull-ups and since the sheet under her butt on the bed has been soiled multiple times since Saturday – what if that sore is still there? What condition may it be in after no cleaning or treatment?


We did receive a prompt response and all items were being addressed. Never really did get a good response to the "glucerna" question but I guess 4 out of 5 ain't bad.

Sure enough Mom did have two sores on her butt, so they put some kind of patch on them that is supposed to be changed every 3 days....kind of like second skin or something. They got her cleaned up as well and we were advised they were bringing in help with staffing.

We were informed at the end of the week that they had shipped the urine sample off to be tested for Urinary tract infection -- which evidently causes confusion in the elderly. The test takes 48-72 hours because they test for exactly what bacteria so they can treat with the exact right antibiotic. So, looks like first of week before we'll know about that situation.

By Friday night, Mom was walking without a walker and was very alert. The nurse said that bouncing between confusion and regular was normal. Mom stated she couldn't believe she had been in that place for three weeks EGAD! She wanted out of there and we needed to have a meeting with those people. She finally agreed to stay there that night since it was already late, but she wanted to meet with them on Saturday. This freaked my sister out. I explained there was no need to react yet because by morning Mom may not even remember anything about going home. I suggested that we load her up for a drive-in snack or lunch and see how she does.

Saturday she was fine, very pleasant and normal.

Sunday, February 1, 2009


Today Mom was moving really well and her face looked good. Good color and looking more like herself. Sister shared some business of check signing with her and she was rather confused about all that. We've decided it may be easiest for her if we just handle all the business and then just provide her info when she asks. No need to add confusion or worry to her but we needed to try once to determine what is best for her. It would probably be easiest for us if she just has no interest in business and just lets us handle it. We'll see how things go.

It was beautiful today and Sister asked Mom if she wanted to walk outside -- but she didn't want to. She did tell them she was going to walk them to the door when they left -- they learned the door she meant was the door to her room. That was still better than she had been. Sister said when they left Mom was standing in the doorway to her room with hands on hip and watching everyone in the hall. Good sign.

I asked Sister what Mom had on and she said the same damn thing she had on yesterday -- evidently no baths this weekend and showers only during weekdays. Mom's roommate said she's only had one shower since she came and that was when she requested it.

So, goal for this week -- get Mom showered and resolve confusion -- if UTI, then begin antiobiotics. If not UTI, then we'll have to figure out what is causing the confusion.

One day at a time and hope for the best.

To be continued....................................