Saturday, December 3, 2016

Sleep Study


Larissa and John went to the hospital for a two night sleep study. Larissa had my iPad so I got a selfie...


A few minutes after 10 pm John texted me that lights were out and Larissa fell asleep right away. Just a few minutes later he sent me a text telling me that she was having a seizure. He said that the room was too dark to see anything but he recognized the sound of her seizing.

The next morning the neurologist came to check on her. We aren't sure how much of the tapes he looked at but he said that he saw 3 big seizures so she wouldn't have to stay another night. He also gave John a prescription for a new medication, zonisamide. He said that her seizures used to come from her frontal lobe and they are now all over her brain. What does that mean? I don't know. Does that mean it is getting worse? Do seizures normally change like that?  She has a follow up appointment in 6 weeks so I won't get answers until then..

I have looked up the medications and really don't like all the side effects. It also looks like a medication that used to be for adults only. I contacted her regular doctor and she said to give it to her but to watch for anxiety and depression. That saddens me. She has overcome selective mutism with the help of anxiety medication and then successfully weaned off of the anxiety medication. Now she is going on a medication that can cause anxiety.

Epilepsy sucks.

Tuesday, November 29, 2016

Thanksgiving

We had a good Thanksgiving. We had no extended friends come this year so our gathering was small.

I dressed Noah in the morning and he went to spend the day with his dad. Kassi had to work so she didn't get to come and eat with us.


We had our usual Thanksgiving meal with lots of left overs so the adult kids could take some left overs home. My mom requested homemade cranberry relish and giblet gravy which I made for her.


Cooking was a challenge this year as the house alarm kept going off. After several calls from the alarm company we realized that it was the emergency key fob that was going off. This meant that Benjamin had taken it from my bedside table. He loves all things key and key chain this includes fobs. It kept going off which meant that it was being pressed somewhere. They turned off the alarm on their end for an hour so we could look for it. That meant that it kept going off on our end, just wasn't being reported. After 30 minutes of searching and constantly turning off the alarm we called the alarm company to see how to turn off the system. Such sweet silence! We never found the fob that day, it was found the next day, in the washing machine!

The crew showed up and we filed the table.


After the adult kids went home we decided to work on the tree, poor thing. I will never buy another prelit tree that has lights that go out if one bulb dies.


We added lights and put on the ornaments.
Kassi came from work for leftovers and helped with the tree.




Anyone else have their tree up? I used to wait until much closer to Christmas to put up our tree.



Monday, November 28, 2016

Doctor Visit

Taking my mom to the doctors requires an ambulance. Sitting for her in a wheelchair is painful.Trying to get her into a car is now impossible. She does not put her feet down at all to help with pivoting. It was a struggle even when she could pivot, her head was always in the way.

The ambulance showed up a little early Wednesday so they gave the kids a tour and showed them their equipment and everything. They were very nice and sat and waited while my mom saw the doctor.

At the doctors office we went through the list of complaints from the social worker.

The social worker wanted my moms weight. Uh, not happening. Not possible to get at the doctors office in a gurney.

The social worker complained that I don't take her to the doctors office often enough. Her doctor noted when she had been in and stated that she didn't need to come in more often, there wasn't a need.

The social worker complained that she must have skin breakage. Her doctor checked her and noted no skin breakage of signs of abuse.

The social worker questioned my turning down hospice care. Her doctor listened to why I turned it down and agreed that losing her long term caregiver was more detrimental than her need to be on hospice care. She did not recommend hospice care at this time but said it might be necessary in the future.

The social worker wanted home health to come in on a temporary basis (I think it was to check skin care). Her doctor said that she could put in for it but wasn't sure that she would get it. My mom has no current medical condition that needs monitored. Her blood pressure was good, she was coherent, her skin looked good, she has no medical devices. The main reason she put in for it was because my mom needs a PPD within 30 days of going into respite. She also stated that if home health wouldn't come in to not bring my mom in, she would stop by and do it herself.

We did give my mom a flu shot. Last week I had asked for something for the crying and she was prescribed something. It is working great so she continued that prescription. It is such a relief to have my mom not crying all the time.Her doctor also told me that if I felt that she needed to be seen to talk to her in person and she would stop by. She doesn't want her brought in unnecessarily.

The doctor also wants to talk with this social worker. She thinks that the social worker is unrealistic and wants to set her straight.

It was a good visit.

Obviously I have fallen behind in blogging, just a tad busy these days. However, I will be catching up today with several posts throughout the day.


Monday, November 21, 2016

Under Attack

 I have been a little stressed lately. For some reason I have been under attack in an area I hadn't expected, the care of my mom. Last week I had someone show up at my door, a social worker from her insurance. She has a social worker from Long Term Community Care as well (they provide the diapers, boost and caregiver). We came up on her radar because I turned down hospice care. She came and talked to my mom and me for a while. She asked how things were going and if I needed anything. She talked about trying to get more caregiver hours and left.

The next day she calls me back. We have a stock pile of diapers and bed pads. After 5 years of receiving them monthly we do have a surplus. She asked me about those diapers and insinuated that we weren't changing her. She also said that my mom had to have skin breakage. I told her that she did not. Folks, she does not have a single bed sore at this time. Charlotte and I work together to make sure that she does not. If either one of us notice a spot we are concerned about we tell each other and make sure that we position her to stay off of it. She really favors her right side and always wants to stay on that side, she will gravitate to the side as well unless we position pillows appropriately.

Then the social worker is concerned because when she asked my mom a question my mom looked at me. Well, yes my mom doesn't know who she is so she looked to the person she trusts. She questions that I am the only one who makes decisions for my mom. My brothers have stepped back and allowed me to make all decisions. They live in Texas and know that I would make the best possible decisions for my mom.

Then she asks me if my mom even has a doctor and if I get her medical care! She had called doctors around here and my mom wasn't a patient of any of them. Well, true my mom has not been going to the doctor that medicaid chose for her. She has been seeing our family doctor the entire time she has been in SC and her doctor is familiar with her. We private pay for her appointments and her doctor and I talk about any concerns as well. I gave her the doctors phone number and began to wonder what was up. I totally felt under attack.

Next she complained about the smell in the room. I had told her on the day she came that we had just gotten the washing machine up and running and didn't have all her laundry done. Apparently she didn't believe me. Perhaps if we had even known that she was coming I would have removed it from the room.

Then she complained about my moms weight loss. Well, we give her 2 boosts a day and feed her every meal. Before I head to bed (midnight to 1 am) I always go in and change her and give her a midnight snack. Some days she will eat well, some days not so well. It is never because she doesn't have food available. We leave fruit bars and other snacks out for her in case she gets hungry. Heck, we even make runs to fast food places when she has requests for something specific (which happens a few times a week). We noticed the weight loss which was why we requested the Boost about a year ago.

After hanging up I really wondered what was up and was quite unsettled. The next day I received a phone call from her social worker. She was quite upset, said that the other SW had accused her of not doing her job. Said that the SW was making all kinds of accusations. Apparently it is also a problem that we had planned our vacation in January. We made these plans almost 2 years ago. We didn't know how my mom would be doing at the time. This is not a cheap vacation, it is not possible to just cancel it. We have friends and even one of my brothers from TX is coming. Once again I heard about the excess of diapers. The SW told me that all her patients who have been receiving diapers for a while have a surplus. She was totally unconcerned about it. Once again I was told that my mom had to have skin breakage.

Then I received a call from my doctors office saying that we had requested hospice care, ugh. After talking for a bit it became apparent that the social worker had also told them that my mom had to have skin breakage. I made an appointment for Wednesday so that they could see that my mom does not have any bed sores or unusual bruises. She is taken care of and not neglected or abused. Her doctors office does not believe that my mom has any signs of abuse or neglect but wants to have it documented. We also put her back on depression medication and will address some type of pain medication when I take her in. She is also looking to do medical homebound.

Today I received a call from her doctor. She asked me who on earth this lady was. She has been trying to get information from them and she has not been supplying it. She wonders why this lady seems to be looking for something. I really don't know what all was said between those two but her doctor was quite mad. This lady seems to do well at making people mad.

The social worker called me this afternoon. She knew that my mom had an appointment Wednesday and wanted to make sure that I knew that she had to have a TB test to go to respite care. I told her that the main reason I was taking my mom in was because of her accusations and that I feel that she is attacking me. She said that she was just doing her job. Hmmmm. Then she said that I don't take my mom to the doctor often enough. I told her that I avoid the doctors office as much as possible. My mom has not been sick except for UTI's because I avoid areas where sick people go. Besides, going to the doctors office more frequently would not make a difference. My mom is progressively dying. I know this. I know that the dementia is getting worse. I know that there really isn't much that we can do to prolong, my concern is to make sure that she is comfortable. If we ever go with hospice it will be because she some type of continued medical care such as pain management.

I am well aware that there is elder abuse. However, this lady claims to be a nurse but doesn't seem to understand the effects of multiple strokes, vascular dementia and being bedridden for years. She mentioned today that my mom had alzheimers. I corrected her, told her that she has vascular dementia and that I was overwhelmed because she had taken another step down. We treated for a UTI because that mimics a step down. There was no change so this is our new normal. Perhaps dementia is dementia, but I have taken care of someone with alzheimers (my father in law) and now her. I can see the difference in progression.

So if you wonder where I have been, I have been under attack......and pissed about it.

Monday, November 14, 2016

Budget Blown

 Last week I totally blew my budget. Three birthdays this month to be followed by Holidays and a cruise and I spent a small fortune (at least it felt that way to me).

Our washing machine is acting up again. I got frustrated and went out and bought a new set since the dryer has been worked on several times. It was scheduled to get delivered on Friday. By Tuesday I had decided on a different route. I will get the washing machine once again worked on and put the new set downstairs. It will be for my use while the kids can use the upstairs one.

Challenges were to put back in the plumbing and electrical. When we moved it upstairs they took out all the old stuff. I didn't want it taken out but by time I realized what they had done it was a little late.

So Tuesday we had our plumber come in. After living here awhile we finally have specific people that we trust. They replumbed it for us.


Then they saw my fireplace. Years ago when I had the gas insert removed (it always smelled like gas) and a gas stove put in they left the line capped like this, inside of the fireplace. I have never used it because I had a gut feeling that it hadn't been capped off outside. Would you light a fire with a gas line capped off inside of it. Well, they checked it out and indeed it had not been capped off outside. Adding a little budget to the fireplace and it is now in usable condition.


Wednesday our electrician came and repaired the light and looked at the outlet. He informed us that when the other company put in the new line they did not use the right wire. He was shocked that our house hadn't burned down. If a fire had started there at night it would have blocked us from the kids! He refused to hook the unit upstairs up. Ugh, kind of defeated the purpose of getting a new unit. So Thursday he was back to rewire for the dryer upstairs. I guess it is a good thing that they removed the old stuff, we wouldn't have realized that they had done an awful job.



I was left with Thursday evening to drywall and paint the back wall (finished Friday morning)

We love having our own washer and dryer. It is right outside of our bedroom. I finished painting over the weekend (A while back I had bought some marked down mismixed paints at Lowes for $2.50 and $3). Well, I it isn't totally finished, we will be adding as we have time.


Larissa is helping





So, budget blown. But, we are safer and happier.

Tuesday, November 8, 2016

The Last Week

 My last week has been so stressed, blessed and fast. Where is the time going?

I finally finished a painting I have been working on.


Wednesdays Vaida comes to spend the night and Thursday with us. This gives Tasha a break and time to study. We enjoy spoiling her. The last few weeks we have had Noah at the house as well. So I have been doing big time toddler/baby duty.


Benjamin and Vaida play together well. There was a time when Vaida was a little scared of our rambunctious boy. No more, she now joins him in getting into trouble.


All this trouble making makes for tired kids!



This week we kept Vaida until Friday because Tasha had a final to study for and she was coming on Friday to babysit anyways.


 We had tickets to see a Crowder concert at Sarah's school on Friday.


The concert was great. However, I know we are old because we were wore out, the concert started late because they blew out the buildings electrical and they had to go buy a generator. The concert got out at almost midnight, we aren't usually out that late. We then brought Sarah home for the weekend.


I felt just a tad shorter than usual.  David Crowder's parting words to me.....Bye Felicia. Sigh, who made that a thing?


Saturday started early for me. I went to buy a crib from someone and then had a birthday party scheduled at 10 am. I left the rest of the afternoon free so I could take the kids out. John was doing disaster relief stuff so I got a babysitter for Benjamin and Noah and took the kids to Moe's and the movies. Sarah came along but didn't want to get in the picture.


I ran up to the shop while Sarah watched the kids and then got called home because of behaviors. It makes it so frustrating when I want to do things with the kids but then they act out.

I got the home front situated and John got home. Sarah offered to watch the kids while we went to dinner. 

It was red head day so we took Benjamin with us. He was upset that he couldn't do the movie but he isn't old enough or interested enough to go yet.


Sunday we went to church and had friends over to make some country fried steak, at Sarah's request.



Sarah offered to watch the kids again so we could go to a movie. We had a date night!



To add to our week my mom has definitely needed a lot of my time and my business is picking up. We have kids signing up for birthday parties and our Christmas Art Camp. 

My washing machine has gone out again and we have decided to go ahead and add another unit downstairs. An electrician is coming tomorrow, plumbers on Thursday and the machines are scheduled to be delivered on Friday. Sounds great and it is. However, someone has to clear out the space that they will be in! My kitchen has exploded and hopefully will be put back together soon. Between Thursday and Friday I will need to drywall and paint the room.

And....
I also need to prepare for paintings this weekend. 
Still trying to reach a doctor for my mom, I have a message left for her and she normally replies.
We are filling out our fostering paperwork and got 1 1/2 hours of training last week. Need a lot more so I need to make time for online training and schedule some classes which is hard because they are on Saturdays. 
I moved some kids around and found surprises but that is another post. 
Talked with the kids youth minister to get some help with lying. Did a lot of research on lying. 
Talked with a therapist. 
Talked with a teacher.
Supported a foster parent in crises.
Supported a former foster placement family.
and finally I got out to vote.

How was your week?

Monday, November 7, 2016

Struggling

I am really struggling with my mom right now. She is miserable. She seems to have forgotten about all of her strokes and the fact that she hasn't walked in over 5 years. She cries and cries that she wants to go home, wants her mom. Today I tried to distract her with some toy magazines telling her to pick out some stuff. Then she cried and cried that she wanted to go shopping....way past dark when I told her the stores were closed. Still she cried to go shopping.

Now she is crying that she wants to walk like everybody else. The kids are upset. I am upset. She is miserable and everyone around her is too.

She is beyond reasoning or understanding what is going on. I had hoped that it was related to a UTI but antibiotics have not improved her mental state. I feel so bad for her. I don't know what to do. I tried calling the doctors office to talk with her doctor but no one answered. I need to call again tomorrow. I don't know that there is anything that they could do to help or not. It is hard because she is so immobile.

I wish that there was someone with all the answers that could tell me what to do. I know I have been complaining about this a lot lately, it has really been getting that much worse. My husband is upset about it and looks to me for answers.