We need a Christmas Break

The last few days, ever since Christmas really, my mother has had a bad migraine. Then she caught the flu from me. I was taught to share *shrug*. It is day 4 of her migraine and while i am starting to feel better, and her flu symptoms where actually not that bad, her headache has gotten worse.
Tonight for a period of a half an hour all I could do to help her was rub her and listen to her pray to God to make the pain stop. Eventually, she calmed down enough, or wore herself out enough, to fall asleep. As she was just starting to fall asleep I crawled into the bed where my dad used to sleep, and I remembered how he used to sit with her when she had a headache, rub her, talk to her, and soothe her. How she must miss this. How she must feel alone now compared to the past 30+ past years with my father beside her.

A New Normal?

My Aunt Jane, who is a wonderful person, my dad's older sister, and was always very close to my dad and is loved by our family has started sending us a series of books to read about the different stages of grief. They arrive at different times and you can read them as you need them. The first one has arrived and my mother and I are taking turns reading it. So far, it sounds like everything we are going through is normal grief. Even the complete exhaustion that causes us to sleep the clock around. I find that I do wish that it was summer though so it would be easier to get out, that it wasn't so cold and the weather so daunting.
I have always been more of a do-er than my mom when it comes to things like organizing, going through things and such. I feel like I should lead the charge as far as going through some of my fathers things that were not sentimental. Some of his new clothes that he hadn't worn long, things that were bought only for the Home that he had been in for the last 6 month. Yet I don't want to do it. I can't bring myself to start it too soon, not because I am not really ready grief wise, but what if in my rush I get rid of something that I regret. Then I can never go back, I can never get that thing, that piece of my father back. It will be gone forever because I didn't wait a while. I rushed into it. Into the decision process with preconceived notions of what was important to me and what wasn't.

How We Grieve

I read this recently and it describes how my mother and I feel, so I thought I would share it here.

"When you lose a parent you lose your past; when you lose your spouse you lose your present; when you lose a child you lose your future."


"Sometimes an anticipated death can become a sudden death. Our loved one may have been terminally ill but died suddenly of a complication. We are left reeling from the unexpected loss, while everyone around us thinks we were [more] prepared for the death"

Mr. Sandman

I have discussed what to do with this blog now. I have used it to work out some anger, frustration, and grief over what had been happening to my father and how it affected our relationship and our family.I haven't decided yet but I might still use it to work through some grief. He has recently passed away in what I felt was a surprisingly fast way. I know. I have been writing this blog since 2009, not very quick right? However, the week before his death he was laughing and joking with us, then he was gone. It was a strange adjustment to make. I knew he was sick, but I had fooled myself into thinking that he was going to be around 'a few' more years. At times that made me angry that this disease could take so long while taking so much from him, but without realizing it, I think it comforted me that I would have my dad a little longer.
I have taken time off of work, some tell me the best thing I can do is go back to work, to get back into life. However, they have not been caring for someone for the last 2 years of their lives. Spending the first year sleeping through the night with one ear open waiting to hear him fall, to hear my mother tell me he was sick again, or my biggest fear- had stopped breathing.
My mother has the same problem. She has spent the last two years listening at night to make sure he is still breathing, listening when he gets up in the morning.
When my dad was in the kitchen and I was in my bedroom I could tell you everything he did, every move he made simply by listening. When he was doing something I knew he couldn't handle doing anymore (such as using the stove) I would hear a shift in his usual pattern and know to get up to check on him.
This was a constant 24/7 watch that me and my mother had to keep on him so he didn't hurt himself, walk out the door, or just make huge messes. Once it got to be too much for us to do 24/7 we put him in Pres. Homes. Then a new tension was built that we didn't even feel until it was over.
With my dad staying away from the house we had to provide certain things for him such as clothes, laundry service, snacks, and then we would visit him. Well no longer understanding that there are other things and problems going on outside where he was staying my father wanted us to visit everyday. Especially my mother, (i can't say I blame him). This would cause guilt on my mothers part, and she would try to be there as much as possible causing her than to get ill, I would than feel guilty for not going enough. In the end we would all be ran ragged.
All the while this is going on at home we subconsciously waited for that one phone call to come saying that he didn't make it through the night, or that he got up when he wasn't supposed to and hit his head really hard and hasn't woken up. All sorts of things that could happen while things are out of our watch.
Come to find out, for two years neither my mother or I had been sleeping like we needed to. We had been sleeping the sleep of a caregiver. Always listening, always waiting.
Our bodies are now trying to catch up after two years. Sometimes all we do is sleep all day long. Our Psychiatrist tell us it is completely normal after someone like my dad passes for the caregivers to need rest like this, but I have never been so exhausted in my life

I love you daddy.

Saturday night at 6:50 pm my father passed away. It was a long battle, starting before we even knew. He fought it every day. He never complained and never asked "why me?". He fought until he was surrounded by his family, waiting for his sisters and his brother to arrive. He stopped fighting so hard once he realized everyone who loved him was surrounding him with love.

He was, and always will be the most amazing man I have ever met, and I will miss him everyday.

A Lot of Talk

So up until this point I have given you lots of information, told you some stories, and some of my depressing stories. I have not however, introduced you to the man behind this disease. My father was one of the smartest, and funniest people I have ever met in my life. When I was little he knew everything, and if he didn't he made it up. As I got older I thought he made up more than I thought, but I wonder now if it wasn't the disease affecting his memory more and more and not that he just never knew these things.

So, here in an array of pictures (as I have not transferred the videos he is in to dvd) is my father.

Then This Happened.

This is an MRI of my father's brain. With an MRI they can scan his brain and create a picture showing bright areas that will allow them to locate areas that have been affected by stroke within the last two weeks. They will also show damage to the brain from past MRIs.
In the upper right scan you can see large amounts of white leaching into my father's brain, dotted with marks of black. The white is area of lost cognition, this is equal to that of an 80-90 year old brain. The black spots within the white of from past strokes that have damaged that part of his brain in those areas.
If you look to the scan just below that, to the one in the lower right, you will see what the newer strokes look like on an MRI. These come up as bright spots. In conclusion, these scans from early this morning showed the doctors that he has had at least 4 new strokes in the last 2 weeks time.
This can mean different things for many different people depending on the type of strokes, where the strokes are and how large of a stroke they have. The kind my father had were actually small ones, but because he was so limited in his speech and movement to begin with it doesn't take much to set him back.
This set of strokes added a new level of discomfort to his life. The most noticeable and painful is called spasticity. When they tried a recommended drug to get rid of the spasticity my father became so "relaxed", and out of it that he did not know anyone around him, could not react to anything happening around him, and had no gag reflex at all.
They have since removed him from this drug and he has slowly started to return to what is assumed to be his new normal, which is assumed to be non-mobile at this point. His speech is very difficult at this point and he still has a lot of trouble feeding himself.

It's Been A While.

In the last post I talked about my dad being being in rehab for anywhere up to three months. Well it is about 3 days shy of that three months and as of last week he was moved from the temporary care part of the rehab facility to the more permanent floor until we could find someplace, a care facility, foster home for adults, or a nursing home, in which we wanted to place him.
This move put quite a bit of stress on my father as he thought that the 3rd floor was where the people went when they were "really bad off". Essentially he thought we were dumping him off on the 3rd floor and forgetting about his rehab, and any hope of him getting any better at all. He remained agitated after his move to the 3rd floor even though we were able to bring some of his things around him, he was still taken down to therapy, and some of his favorite nurses actually worked on this floor as well. It was hard seeing him so unhappy but there was no where else to move him at this time. According to law he had to be moved from the temporary unit at this time and we have put his name on several waiting lists for homes that we like, but none of them have a bed available for him yet.

Soul Tired.

So, it has been a strange week and a half. My dad is still in rehab. Like I (think I) said, he will be there for one month to three. Last week we got a call from the rehab facility saying that he had awoken to have some drooping of the Left side of his face (opposite of last time) and was feeling numb over his Whole body. He was transported to the hospital via an ambulance.
My mother had been sick with a horrible migraine from the day he went into the rehab facility on, she was not able to even leave her bed to go to the hospital to see what was wrong with him. So, I went and was met there by my aunt Diane. We waited there as they did some blood work and scanned to see if there was any new bleeding in his brain. Hours later (much longer than it should have taken) they came back to tell us that there was no new bleeding and the consensus was to return him to the rehab facility. He was very tired, and VERY confused. While he was waiting for transport from the hospital to the rehab facility my aunt and I left him to sleep, I went to pick up my mom and bring her to meet him at the rehab facility.
By the time we got there he was so confused he had no idea what day it was, he thought it was morning, it was 7pm. He had essentially lost an entire day. He did not remember me being with him at the hospital for the entire day.
The next day my mother was down for the count again. Getting up and going to the rehab fac. the night before had been too much when she was still in migraine mood and she was down for the rest of the day. I left to take dad some more clothes and check on him. I met my brother there during dad's therapy and dad was feeling Much better. Joked with us and his therapists, sat up and visited with us for a few hours and was quite with it. The movement in his left side is fine, it came back and the numbness faded. They are not sure if it was a TIA or a complicated migraine.
Fast forward 3 days, dad is still in rehab, working on his left side to get some control and movement back. He is cranky as he does not want to be there, but who would. Mom started to recover from her first migraine, was up, moving around for 2 days when she was hit by a REALLY BAD ONE! I only have to take her into the hospital for migraines about 2 times a year, and last night was one of them. All she could do yesterday was cry and hold her head and pray. I told her she either had to come with me or I was calling an ambulance. She came with me. With a HUGE bucket to puke in. We made it sans puke. They gave her what is called a migraine cocktail. It contains 3 shots, an anti nausea, a steroid, and a pain medication. Takes the pain away stat and makes you sleep a lot. We were both exhausted by the time we got home and fell into bed. That is how things sit today. We will see how she feels today, see if she is up to visiting dad, I am still tired and still have the headache the stress of yesterday gave me.

It Wasn't Me.

So, from the very first fall at home until his last fall in rehab; my dad has fallen 5 times. He keeps forgetting that he can't stand up on his own, or simply tries to be too independent. After the last fall, they have taken some precautions such as lowering his bed so it is harder for him to get out of bed to begin with, not as far for him to fall, and bringing him out to watch tv by the nurse's station when he wants to sit in his wheel chair, so that he does not attempt to move himself from his chair to his bed again. Then if he does move the nurses are much closer to him.
The nurses and aids have been teasing him because word has gotten around that he has trouble staying in one spot. So yesterday he told them that his evil twin was the one that made him get up, and for Sunday his evil twin was gone, so he wasn't going to stand up THAT day:)

Status Update

We went to visit him last night and he had been to therapy earlier in the day, so he was exhausted from that. He was still unable to get up on his own and is not able to put any weight on his right leg. The strange thing is, is that he can feel it when you touch the right side of his body. He is not able to move his right arm at all but he can feel you touching him.
When he fell yesterday he cut his ear and his head. That really made an impression on him and I don't think he will forget that he can't stand up, at least not soon.
The therapy people have given us notice that they expect him to have to stay in rehab for 1-3 months. This is his longest stay yet. Even the first time he lost feeling in his leg he didn't stay that long.
His speech is a little slurred. It gets worse when he is tired, but after the first day in the hospital his face started to drop on the right side, and his words have been slower and more slurred.
I told him that if his ear was really mangled he could tell people he got in a bar fight and someone bit it off;)
Yesterday he was actually in better spirits than he has been since this new stroke happened. The first night in rehab, he sounded and looked really bad. Yesterday his spirits where higher, and he was happy because they replaced his old box tv with a new flat screen, so I spent a lot of the visit helping him learn how to use the new tv remote so he could watch his tv that night:)

As It Is Today.

When I first started this blog I thought I would maybe use it as a way to keep people up to date on how my dad was doing. Today, that is exactly how I am going to use it. On Tuesday morning my dad woke up and just like every morning he got up and took a shower. However, my mother noticed that he was very shaky and was having trouble with his balance. She told him that he should go back to bed to rest some more. When he tried to get up again about an hour later my mom told him that he was still to shaky to be walking around and tried to get him to sit down while she was holding onto the lapels of his robe, at this point my father turned to his weaker side and fell to the ground taking my mom with him as her hands were caught in his lapels. Now for those of you who don't know, my mother has 7 broken vertebrae in her back and is not supposed to bend over let alone be bent over to the ground by a 26o lb man. Luckily she was just stiff and sore from the ordeal and did not break anything.
My dad's right side had gone numb. He had no feeling in the entire right side of his body and I had to prop him up while my mom called the ambulance to come and bring him to the hospital for tests.
The ambulance and the police came within minutes. Apparently there was another 911 call at the same time in our building. It took them awhile but they got dad onto the stretcher, and took him away. We had yet to get dressed for the day.
By the time we made it to the ER dad's neurologist was in with him and had determined that he needed to be admitted. He had a MRI, and eco cardiogram, and many other tests. Thursday he was transferred from the hospital to the rehab facility. He is still bedridden, and keeps forgetting that he can't walk. He has fallen twice cutting his ear and his head because he thinks he can still walk, he simply forgets that his body no longer works the way it used to. That is where we sit today. I am about to go and visit him.

I Do Not Envy You This Task.

When my dad was in his early 2o's he attended Dunwoody Institute. At that time it was a school that you earned a two year degree as a mechanical technician (mechanic). My dad had never enjoyed school, and while his other siblings went on to four year colleges, my dad wanted to do something where he would be able to work with his hands, something were he would not be stuck behind a desk day after day.
While attending Dunwoody he met a fellow student by the name of Jim. They were of like ages and temperament, and became good friends. After graduation they decided it would be an adventure to move out west, I don't know how Jim handled letting his family know he was moving, but my dad waited until my Grandmother (his mother) left for work one morning, then he loaded up his car and left for Colorado. He called her later that night to tell her he was moving. He didn't want there to be any chance of being talked out of his decision:) Jim and Tom (my dad), moved into Colorado Springs with little to their name, no jobs, no place to live, and no friends or family even close let alone in the state. They both got mechanic jobs, shared an apartment, and had adventures that for some reason I have never been allowed to hear.
Eventually, my dad moved back to the cities long enough to meet my mother, then my parents promptly moved back to Colorado, they moved into Jim's apartment until they could find a place of their own, and my dad began to work for Jim at his shop (mechanic shop). There is not one story that my parents tell from this period of their lives that does not include or refer to Jim in some way. He was my father's best friend for a huge, and important part of his life. About 8 years ago I finally got to meet Jim when we took a family trip out to Colorado Springs and it was like the two of them had not been separated for 20+ years.
My mom and I have been thinking about Jim lately because the time has come to make the phone call to Jim, and tell him that my father is stricken with a disease that has wasted his mind. That while my dad might remember him, there are no precise memories of him for my dad to recall. This horrible chore of calling this long time friend falls on my mother's shoulders and I do not envy her this. However, if I were in Jim's shoes, and a good friend of mine from my past was ill, I would want to know...before I got a funeral announcement.

The Dumbest Thing

So we have been exploring options for when it comes time to place my dad somewhere such as a long term care facility ( also called foster care homes, memory care facilities, and Full time care homes. They don't really refer to them as nursing homes too much anymore even though that's what they are.) We have found one that is literally 4 blocks away from our apartment and offers memory care, which is a housing unit that they live in full time, but instead of things being completely taken care of for them they are encouraged to take care of themselves by doing things like setting and clearing the tables after meals, engaging in games and activities, having chores based on their levels and capabilities. This is where we would like to put my dad as he is only 59 and while he is getting to difficult to keep at home, he is no where close to just sitting around all day. However, when we called to see if his funding would cover this care facility we were told the DUMBEST THING! His funding will not cover the memory care facility because it is hooked onto a long term care facility, but his funding WILL cover a long term care facility. WHAT!? He can't go into the memory care until he is 65, by then he won't need it at the rate his mind is deteriorating! Who do they think needs it more, the older people or the younger people with brain damage?! At this point we can think of no option other than to put him in a long term care facility where he would be left doing nothing but sitting around all day except for the days and times when we would come in and see him. A sure fire fast way for him to go downhill even faster. We haven't made any decisions and don't plan to for awhile, we are still making lots of phone calls, going over people's heads, and banging on doors if we need to. Our conclusion is that there is a huge gap in the care for people with brain damage in the medical field. They simply don't know what to do with these people, how to categorize them, and what benefits if any to award them because their "affliction" is so mysterious and changes so much from day to day. My mom and I can barely keep up with what my dad can and can't do.

The First Step is a Doozie

Early this morning I was sleeping and heard a loud noise and my sleeping mind dismissed it, until my mother came in and told me to get up, my father had fallen down twice and she would need my help. So, i threw off the covers and bolted out of bed without putting on my glasses. My dad was laying on the floor of his bedroom, he had lost feeling in one side of his body and when he had gotten up to go to the bathroom it had collapsed out from underneath him pitching him against the wall and onto the floor. Then when he tried to get up a second time, it happened again. By the time I got on the scene my mom had him laying on the floor and he was mad. The status quo had once again changed for him. He had been getting along fine in his mind. He was walking, talking, eating, getting up everyday, he thought he was fine. Then Bam! one morning he is suddenly and rudely reminded that, no just like we have been telling him he is not fine, he does have something wrong with him, and now he has to learn to adjust again.
My mom told him he was going to have to go to the hospital. He was surprised! He just wanted to hang out in his room until he feeling went away. Even though we would have no way to get him to and from the bathroom. Then he was even more upset when he heard that we were going to call an ambulance to come and get him. I don't know how he thought we were supposed to get him to the hospital ourselves when we could not even get him back into his bed without major pains.
The doctor in the ER admitted him even though his strength returned once he was put on oxygen in the ER. He is not happy about having to stay in the hospital, but he always adjusts after a few days and there is no where he feels more comfortable after an episode like this as he is so unsure of what his body and brain are going to do.
I really don't blame him for being angry, going through life and you just wake up one day and suddenly something stops working that you have always taken for granted like the ability to walk. That would make me angry and bitter.

The First Step is a Doozy

My dad fell today. I have the feeling that he has fallen a lot, he just hasn't told me or my mother. The difference today was that he fell outside and scraped up his hand and arm and fell in front of the driver who takes him to his day program. There was a witness this time. Someone who would tell on him. So, right when he got home he came up to us like he needed to say something, but I was reading something to my mom so he had to wait. Then the first chance he got he said "I fell on the stairs, it was so stupid". Then we had to proceed to play twenty questions with him. "did you fall up them or down them?, did you hit your head?, How far did you fall?, Do you remember hitting your head, or not?, Where were you when you fell?, Were you inside or outside?, Did someone see you fall?, What staircase did you fall on?, How many steps were their?, Was their carpeting on the steps?, So, then you didn't hit your head?, Does your back or neck hurt?". Well you get the idea. This lead to deciding that he fell down the concrete steps outside the building; all the way down them, did not hit his head and had to be helped back up by the driver. The point that was worrying was that he was dizzy. This means something is off. So, back to the ER we go. Actually I feel nasty so it is my mom's turn tonight. She called his neurologist and his nurse suggested that we bring him in to get looked over (I think it is an overreaction but what do I know).

Water Hazard

So one of the things the Doctors have always asked is if my dad has problems swallowing. He never really has, until now. I always thought he would have trouble with his food first. Some of the starchier foods such as breads, rice, and potatoes would be harder for him to swallow, as the muscles would not respond as his brain intended. I was wrong. When stroke patients start to have troubles swallowing the first thing they start to choke on is water. That's right, water. The clearest, easiest substance we drink. The substance we must drink in order to go on living. I mean sure you can get water from other liquids, but when it comes down to it your body still needs water to survive. We had slowly noticed that he no longer drank his water with his meals and would only take a sip or two at the end. Then we started to hear the choking noises as he was drinking the water. We have a temporary solution in that of a straw. This makes him take smaller amounts of water into his mouth at a time, giving his brain time to adjust to the idea of swallowing and then he is able to swallow the smaller amounts better. However, it is only a matter of time before we have to start supplementing his water with a mixed liquid that is thicker so that he can drink it while still getting the benefits.

Judgement Call

The river by our house has flooded, and every day my dad goes out to check and see if the water has gone down. Everyday he comes back in and tells me that the water hasn't gone down much at all. There is only one problem with this. He does not remember where the water was yesterday in order to judge if the water has gone down today:)

Even Though it Isn't Just About Me.

Yesterday i got mad. I got mad at this disease, I got mad at my father and I just got mad in general. I was mad that this disease had taken my father from me, the man I loved, admired and laughed with my entire life. The man that i dreamed would walk me down the aisle on my wedding day, would tease my children like he had teased me, would give my husband a hard time, and would have philosophical discussions with me until he was in his 80's. This man was gone before i knew he was even slipping away. This disease had robbed me of all these future dreams and thoughts, and it made me unbearably hurt and angry.
Then for no other reason than I had no other person to aim my anger at, I got mad at my father for "cursing" our family with this disease. For making me wonder daily if the reason the doctors cannot control my seizures is because they are not seizures but small strokes. If I have been having strokes since I was in my late teens, just as my father had and just have yet to be diagnosed. I felt anger that he had "given" me and my brother the chance at this disease and taken away my choice at having my own children (i will not pass this on). I will never get to hold my own baby, see my own traits and family traits reflected in my own child, or the traits of my husband. This made me unbearably sad and angry yesterday. I wept for my father who is so confused now days, I cried for the future we have lost together, but I finally cried for myself and what this disease meant and has taken from me.

The Group Home Debate

My mother and I have been going around and around about whether or not we are ready to put my dad into a group home. How can we tell if he is ready, how can we tell if we are ready? How do we know when we have done the best for him? How do we know when it is better for him to be in the group home and not to be living with us anymore? How do we know when his care has taken over too much of our lives and it is time to progress on to the next stage of his care? How do we know this isn't going to hurt him more than it is just going to be to help us?
The woman helping us with his care, and our therapists tell us these are all common questions to ask yourself, feel guilty about and wrestle with when placing a loved one into a care facility, and to be even more comforting they tell us that no matter how posh the facility, how wonderful the care, and the people the majority of the people react horribly to being put into these places. Yay:( None of these things we found truly? helpful in making a decision.
So the question is how do you decide For us we have gone back and fourth. Having stolen conversations while my father was away at his daily care facility. Conversations wondering about how much longer we would be able to care for him without losing our minds because some days are just so hard, wondering what we would do if he took a sudden turn for the worse and we had no where to put him and neither of us could care for him, and wondering what we would do if someday his anger (from his strokes) took over and he took it out on one of us physically.
Well the answer to all of our questions came in a rather strange way. My mother has been ill since before christmas. She has been in and out of bed with first a horrible virus, then on and off migraines ever since. We couldn't figure out what was bothering her, she could never get enough sleep and was tired all the time.
Then after christmas, around the first of the year came "the call". They had a spot open at one of the group homes connected to my dad's care facility. NICE group homes. They wanted to know if we wanted the spot. Mom hesitated....then turned the spot down. She didn't think he was ready for the group home yet. Thought he was too aware of things around him. Now to be fair my dad is fairly aware of some things, but he has little to no short term memory, doesn't remember what he did for his jobs all his life, and at dinner time doesn't remember what he ate for lunch. He has trouble working the microwave, the tv remote and the vaccuum. This leaves us with only the option of watching him 24/7 so he does not harm himself, or put others in danger(i.e. trying to drive, leaving food in the oven, leaving the stove on, putting something metal in the microwave and starting a fire[he did this, we put it out]).
Ever since "the call" my mother has come to regret not putting my dad in a group home when she had the chance, she knew it was a good place, the owners were great people who care about the people they are taking care of, and he (my dad) would have known his roommates.So, now we are waiting until another slot opens up in one of their homes. Who knows how long that will be.

1 O'clock.

The other night at one o'clock in the morning my mother woke up to hear the shower running. Her first thought was that my father had an accident in the middle of the night and was washing up. So she checked the bed and it was dry. So, she went into the bathroom to ask him what he was doing, and very indignantly he replied "I'm takin a shower!!" and my mom said " It's 1 oclock in the morning!" to which he replied, "I'M TAKIN A SHOWER" so she yelled back "IT'S 1 OCLOCK IN THE MORNING!!!". He looked at her and said...."oh, well I'm already wet, i might as well finish" :) So, he finished and went back to bed.

CADASIL Movie Time (just some of the facts)

He Stole it!

Okay, so I eat a bagel every morning for breakfast. Last night I noticed that there was only one bagel left so I hid it in the back of the fridge. When you hide things in the back of the fridge my dad never finds things! He now looks into the fridge and can't see things that are right in front of him! Yet, SOMEHOW he found and ate my bagel! I was bagel-less this morning. I couldn't beleive it! I was astonished! The man never stops amazing me.

Things I Would Lock Away if I Could

If I had a huge lockbox I would lock our fridge, thermostat, my dad's pills, the front door, and the keys to the car away in it, and only my mother and I would know where the keys were kept. I know this doesnt make sense. How would I keep our front door locked up in a box. The point is that these are the things that cause us the most problems with my dad. He sneaks out of the apartment when ever he is able. He eats and sneaks food whenever my mom or I are not paying attention, and it is not just snacks he is eating either. He has started to forget when he has eaten meals. So, he will eat lunch and then an hour later he will get up and start to make himself another full meal thinking he has not eaten. Several months ago we had to take over administering his pills, he could not remember when and what to take, or if he had even taken them. So, he would end up going without or DOUBLING his dose for the day or night. This led to locking away all the pills in the house and just administering his pills as he needed them.
As for the thermostat, remember when you were little, and you came out in the wintertime to complain to you parents that you were cold? Mine always told me to "put a sweater on" well if my dad is the slightest bit uncomfortable, too cold, or too hot, he comes out and adjusts the thermostat. It doesn't matter if he is cold and only wearing a short sleeve shirt he cranks the heat up and roasts the rest of out until we realize he has changed it. So, these are some of the things in my home that I would lock away as to control some of the chaos a little.

The Hardest Part Today.

Several times over the last month my mom and I have caught my dad having problems, getting sick, or just doing something that he shouldn’t and hiding it. Let’s be honest, we expected the last circumstance, but within the last month or so he has hidden things like when he threw up when he was getting the flu, when he spilled a cup of coffee all over the floor and didn’t clean it up for hours, and when he hurt his foot in the middle of the night and bled all over the carpet and the floor and didn’t clean it up leaving a dried trail of blood across the house. My mother and I have always had to stumble across each mess later and ask him specific questions in order to figure out what has been happening to him while he has been in the bathroom, taking a “nap”, etc. While this has become and annoying side affect of his brain damage it is not unmanageable. We just become the annoying twins that ask him all the time if he has to go to the bathroom, if he feels sick, if he ate, if he took his pills (then we check because he doesn’t remember), tell him to remember his cane, to put on his coat, to take his keys with him, to take off his shoes, to take his coffee with him in the morning…


I don’t blame him for getting annoyed with us, we pester him to death just to get him out the door with all of his stuff in the morning, but I know if we don’t he won’t take his pills, won’t take the keys to the building, wear his medic alert necklace, take his book for therapy, etc. Some days when I hear him getting up to get a snack I have to get up and see what he is eating to make sure A) he can eat it, as he is allergic to milk and B) it is not something that he shouldn’t eat as it has maybe been in the fridge one or two too many days.

So...I digress. My point was, while this is annoying it is manageable right? What I fear is that one day something is going to happen to him, something like he is going to have a horrible reaction to a stroke and not tell us, he is going to hide it. Then we will have no recourse until it is too late. I walked into the bathroom the other morning and found an extremely bloody Kleenex in the waste basket. Turns out he had a bloody nose that day and hadn’t told anyone, even though he couldn’t remember how to stop it.

One day something is going to happen to him and he is not going to tell us until it is too late, I just know it.