5 months, 22 days

It's the second day of 2018. Mother has been living in WB Acres for 5 months and 22 days. She has gotten used to being there it seems but has good and bad days. Her cognitive state is pretty much the same. Short term memory is affected but she remembers things from her childhood. She recognizes everyone but has no real concept of time. Her Macular Degeneration appears to be holding steady so we are able to go 9 weeks between injections this time around. It's challenging though to get her to focus on keeping her eyes open and her head back for the numbing drops. Her focus is fleeting at best.

It was our first time celebrating the holidays with her not at home and I was quite anxious about how it would go. Thanksgiving didn't go so well. She really wanted to go home and it turned out we had to leave since she was just getting more and more upset at us. Christmas went better with us bringing goodies and dinner from home to share with about 5 of us privately in the facility conference room. She was the center of attention and got all the gifts we'd brought her. I had shutterfly make a book of many of our family members so that she could look at it when feeling lonely. She likes to look at pictures and seemed to enjoy the book. Dad bought her the most beautiful wool cardigan from Ireland that was especially warm and cozy. She looked lovely in it. Until the facility washed and DRIED it. It shrunk so badly she cannot even wear it. Needless to say we were not happy about this but what are you going to do. He went out and got her some less expensive cardigans instead that are washable but it's such a shame resident cannot have anything really nice without someone losing it, stealing it or destroying it. It's not just at this facility either that this is the case. We should have told them not to launder the sweater but it was an expensive lesson on our part at this point. I did buy her an inexpensive ring she can wear instead of her wedding rings just in case she lost them. So far it's still there!

I don't know what 2018 will bring in terms of her care or how things will go since we are still navigating one day at a time. I pray that whatever it is will keep her safe and my Dad can continue to be healthy enough to visit her 4 times a week. That is the only thing that truly makes her happy.

Day 21

Yesterday, My Dad & I, took Mother to the eye doctor. She has Macular Degeneration and it was time for an injection in both eyes. If we don't do it she could lose her vision except for peripheral. She was up and ready when we got there and happy to see us. She didn't seem to remember that Dad was just there yesterday. We got her in the car with the gait belt but without much help really from her walking/turning, etc. Off we went. Unsure how things were going to go. I could already tell she was a bit irritable but wasn't sure why. She had these injections a few times in the past but she quite possibly could have just had anxiety. She was adamant that she NEEDED one of the Doctor's office pens so I finally gave her one hoping that would give her something to focus on. Wrong. Either way she was impatient and didn't care for the chitter chatter from the other patients in the waiting area. We kept assuring her it would soon be our turn and thankfully they got her in a room! We also were reminding her we were going out for a late lunch afterward but even that didn't seem to change her disposition.

The injections went well. The Doctor seemed quite concerned with the rapid rate of her cognitive decline but I assured him we had seen specialists already and it was a dementia diagnosis. Afterward Mother's eyes were quite sensitive to light and I wish we had remembered her sun glasses. We made it into the car again but she was obviously growing a bit tired because the transfer was even more difficult. She complains about being manhandled but then doesn't do anything to move though either so it's frustrating. Once inside Perkin's restaurant she as I anticipated struggled with making a decision. She has a real hard time recognizing the letters at the eye doctor on the chart I noticed but she can still read. It didn't help that she was having a hard time seeing after the injections too with the menu but the sheer amount of choices overwhelm her. She just becomes more irritable if she's offered suggestions. She fiddled with the gait belt, finally removing it entirely. She wasn't the right distance from the table no matter where we put her transport chair. She didn't want anything to drink but then wondered where her coffee and milk were. She had real trouble cutting her huge pork chop and then didn't care for it at all but tried then eating a piece of the fat that had been removed with her fingers. She ended up just eating the mashed potatoes and gravy, corn and piece of bread along with some of Dad's coffee. It was free pie day so we took her home a piece of caramel apple pie.

Once in the car she kept her eyes closed the entire time I'm assuming from the sun because she was constantly now trying to remove her sweater and pull the potty pad out from underneath her on the car seat. Which just pulled her down further in the seat. I kept trying to assure her she didn't want to do either of those things but she just told me to leave her be. Once back to WestBrook we put her immediately into her bed where she was ready to take a nap. I was told by the nurse that she had a restless night and got up on her own sometime late, tried using her walker I'm assuming to go to the bathroom or to attempt wandering, and fell on her bottom. Thankfully she wasn't hurt they said. My Dad & I think at this point we may be beyond transporting her ourselves and may well need to use a third party people rides service in 6 weeks when she goes back for another injection.

Day 17

Today I was going to stay home and do laundry. That was until I called to check on my Mom and my Dad put her on the phone to talk to me. She was crying because she thought I was dead. I immediately went up there and made sure she knew I was very much alive and there to see her.  For some reason today she had a lot of anxiety and was weepy off and on even with my trying to redirect and distract her. She really misses her dog and wants it to be able to stay at WB with her. That isn't possible but trying to help her understand that is difficult. I even told her it was a state law! It worries me that once the dog is there visiting that she becomes more agitated when it's time to take Molly home. I'm torn on what is best for her. Dad's taking her there tomorrow though so we'll have to see how that goes.

We also talked about her own death since she was contemplating whether she'd actually wake up tomorrow. Unsure if she was ready or not she murmured. After having a bit of anxiety medication she began to calm. She then stated that she wasn't ready to go. I reminded her how she beat cancer's arse already so this wasn't going to get the better of her either. Reassuring her that even though she were there in WB we would be with her the whole way and she was not alone. You see she has a lot of baggage with people leaving her and now at her most vulnerable she's even more afraid and sure that we have to leave her too. My Dad isn't like that though. He's in it for the long haul and so am I. He's her final gift of security. The one that doesn't leave. I can relate to this.

We're learning a lot more about how to deal with dementia patients mentally & emotionally. The medication has seemed to help too. Now we have to get her more physically strong to walk around with her walker on her own. The toileting seems to be going better with the new antibiotic they prescribed for the urinary tract infection they FINALLY got a positive result on. My dad seems to think if she could be stronger we could possible bring her home. I'm uncertain. He also wishes she could move out of the dementia ward into the general population. I don't know if were just fooling ourselves or if it really is an option. Time will tell.

Decline Part 2

The Doctor suggested that we stay at the ER because they were going to try and do a Telehealth psychiatric evaluation since they didn't have anyone at our local hospital. It's like a teleconference where a nurse practitioner spoke with Mother and then with us about her history and what had been happening. They need to determine if she was a candidate for a mental ward rather than dementia ward or what. We stayed up all night with Mother until 7:30am we finally got the teleconference. There is was determined she was not qualified to be a geriatric mental health patient so transferring her to their facility was not going to happen. Back to square one now. More tests were ordered which she refused and off and on all night she had not slept and asked for me but then just yelled at me each time. It was the drug reaction I told myself. Tried finding as much patience as possible dealing with it but frankly my anxiety was through the roof. We did work with the social worker at the hospital but it was slow going. We convinced her the Doctor needed another urine sample this time to grow a culture since the previous 5 times we'd tested all came back negative for UTI's but her incontinence continued. They also wanted a CT scan to make sure nothing showed that could be suddenly creating this behavior. They decided the Zyprexa they were giving her wasn't working since she was still seeing bugs that weren't there. Risperdal became the new drug. The only nursing home with an availability with a memory care unit was 29 miles one way away from us and it was not going to take her without a PASRR evaluation. It's complicated and takes time so she was in the ER for 3 days before they finally found a room upstairs in the hospital for her. They weren't admitting her so her insurance wasn't going to pay for it but she began getting bed sores from the ER cot she was on so I think they took pity on her and she spent a day and a half in a very nice room where she was comfortable and safe. They also told us in the ER they could keep a better eye on her in the ER rather than upstairs which is why she stayed there so long.

When I asked the social worker if this was something that happens to others or if we were some sort of special case she assured me they'd had this type of situation with elderly dementia patients before. They kind of fall through the cracks and the cuts in Mental Health services in our State didn't help put this hospital in this screwed up situation. We really need better help for geriatric patients with dementia that exhibit behaviors too where they can go to get their medications sorted out before a memory care nursing facility will accept them. Because she had gotten 2 days under her belt of good behaviors and the psych evals came back, suddenly Westbrook Acres decided they'd meet with her again and bypass the requirement of the PASRR. So before we knew it Tuesday afternoon she was discharged and we had to transport her to their facility that we'd never seen before. It was our only option seeing as my Dad didn't want her any further away. Once again we all became extremely anxious again on how the transfer would go and had no idea what to expect. For all we knew something bad would happen and we would not be accepted and we would have had no other choice but to take her home where we all felt helpless and overwhelmed by the thought of having to care for growing needs. 

Today it's been 11 days since she'd been admitted and it's been a day to day to struggle. I've decided to try and document what's happening in hopes of chronicling our descent into dementia with our loved one and having no skills whatsoever to draw on.

Decline

My Mother for the last 5-1/2 weeks has been struggling with a decline in her physical health. She's been diagnosed with dementia over a year ago and we'd seen her getting more and more confused. It's taken a back seat though to her lack of balance and inability to really walk safely. She's suffered at least 5 falls while at home. The last one happened while I was at the Saluki Nationals the second week of June. She busted her head open requiring stitches and fractured her left arm below her shoulder. It's unable to be casted or operated on so she was to wear a sling and keep it immobile for 4-6 weeks. She'd also become very incontinent over the last 6 months and taking care of her became more and more difficult on my Dad. We decided it was time for her to go into a nursing home to try and heal the arm and do physical therapy in hopes she may return home.

We decided on Hawkeye Care Center and though she didn't want to go she begrudgingly agreed as long as it was temporary. Moving her there soon showed us just how much she was sundowning. The first night there she tried to bite a staff member. We knew she has always been easily agitated and continually stubborn to have things 'her' way. We tried accommodating her. We made sure she had tv, her iphone, magazines and visited daily even eating meals with her. She was there a week and a half before she was sent to the ER for 'behavioral' reasons. She'd knocked the meds out of the nurse's hand and was going over the edge my Dad was told as to why she was sent to ER. There she wasn't overly belligerent but she did refuse to go back to Hawkeye. They gave her a low dose ativan that seemed to have no affect on her whatsoever. She wasn't combative there though, only adamant about not returning to the nursing home. She just doesn't want to believe that she cannot walk nor take care of herself. We preferred to have her transferred back to Hawkeye by ambulance fearing her combativeness if we took her by car. We gave them permission to give her an injection that would knock her out so that she could be compliant. Ironically the ER docs can give injections and use bed rails or restrain patients when necessary but in nursing homes that is no allowed. Injections are but they really do not wish to have to give them by force so even though she now had an order to be able to use one if she became combative again, they weren't going to.

She was groggy the next day but compliant again at Hawkeye. The Doctor decided to put her on a new drug called Seroquel to help with her dementia and behaviors. I found out she had an old friend, Judy, who came to visit her during that time but Mother reported that no one had been there to visit her at all. This was another red flag that I'm learning that points to dementia. Lack of memory and loss of time. Unfortunately, a few days later (she had now been there 3 weeks) another visit to the ER was necessary. This time they believed she was having a reaction to the Seroquel since her behavior was overly combative, foul mouthed and violent toward staff and to family. It was midnight Friday night and Myself, My sister & Dad arrived to another new nightmare of uncertainty.

She wouldn't let the Doctor examine her. She yelled about him having lice and I literally had to hold her arms from scratching him while he looked in her ears, eyes, nose and throat. He gave her a shot of Haldol to try and calm her which didn't really do much at all. Later a small dose of ativan was given and eventually they started Zyprexa the next day. Due to it being a weekend it looked like we were stuck there in ER because Hawkeye wouldn't take her back with her behaviors (she also refused to not get up on her own and had fallen twice so non compliant). We now began to learn about where do we go from here.