The last month has been pretty good. Dad texted and said this is the best he's been in three years and he hopes it lasts a long time. He's been very lucid, conversations have been great and he really does seem happier. I really, really hope that he is truly happier and not just "putting on his happy face" like he said he was going to do. He has started patrolling with the Community Watch Citizens on Patrol and I know this is something that he would like. When he texted me to tell me that he's been feeling great I didn't say what I wanted to say... that the reason he is doing so well is because he's in a controlled environment, his meds are controlled, there is routine and he's not just sitting at home in the basement all day . He's so close to downtown that he can walk to pretty much anything and he's by the river too so there are lots of walking trails. My mom went away on a trip and we talked yesterday for the first time in a few weeks and she told me that dad is doing really good. The best she's seen him in two years - and I knew she was doubting him having to be in the care home. The stuff I didn't say to my dad I did say to my mom. Deep down I know she knows he needs to stay in the care home but I think she second guesses herself when he's doing so good.
In August when dad was in the hospital for the second time I had a hard time understanding why my brother would think maybe dad didn't have to go in a home but when I flew down there for the family meeting at the hospital it was the first time I had seen my dad since he ended up in the hospital... and I understood why you could second guess the care home route. He looked ok and even though he was a bit confused and his thoughts were jumbled he conveyed himself quite clearly. Man oh man it was hard to see him at the hospital. As a family we had all agreed that he needed to be in a care home but getting dad on board was another story. Thankfully the doctor that had been overseeing him while he was in the hospital agreed with us and that really helped because dad quite liked him and seemed to relate with him well.
I absolutely understand why mom would be questioning dad at the care home. I know she feels bad too and when he's doing good she thinks maybe he should be at home. I imagine it is even harder when you are there and actually see dad. I told my mom that he needs to stay in the care home. We don't know how long he will be like this... it could be month, it could be days. He has a room in the only care home in the city and I don't know what we would do if we gave that up and a few months later he took a turn for the worse. Do we want to go through everything we went through over the summer only to have a different ending and him being in a care home an hour away instead of 10 minutes? We know the worse is coming but not knowing is hard. Do we go there for Christmas because it might be the last one where dad remembers who we are? How can I be mad at him and not talking to him when I know he's dying? There are a lot of "what-ifs" and I'm sure one could drive themselves mad playing that game. What if we go there for Christmas and it ends up like Thanksgiving? I don't want to put my kids through that again. I don't want to see that again.
So things are good. And praise God that they are good for dad right now. It feels so good to talk to him and hear my dad like he used to be and he's actually excited about life again. I so wish my kids were able to spend more time with him when he's like this. And there's the hard. Hard for me here because I don't get to see dad when he's good. Hard for my family there because they see dad when he's good and perhaps that makes it harder to see him in the care home. But we will definitely take the good because the more good memories we can make push those bad ones further away. I need to remind myself to thank God when things are going good, not just ask for his help when they aren't. So thank you Lord for giving me and my family these good conversations and times with my Dad.
Saturday, December 7, 2013
Tuesday, November 12, 2013
His iPhone
We were out at a friend's house to watch the football game this weekend and Dad called my cell. He had just gone for a walk and used the Nike app and the line that maps your route was showing up but not the map. Did I know why? Yep I did.
When Dad was in the hospital the first time after he went missing after a few weeks he started asking for his iPhone and we, as a family, weren't sure if he should have it. He had tried to sneak out of the hospital a couple of times, there was concern about him making long distance phone calls and he had also said a few times that there was no way he was going into a home - he was just going to disappear if that happened. My brother really felt that he should have it so we all agreed and he went through and checked his contacts and then my sister and I went through and enabled the restrictions - the main thing we wanted to do was turn on his location services (so that if he went missing again, we would be able to find his location if he has his phone on) and then NOT allow him to make changes. We went through his location services settings and turned off everything except for Find my iPhone - mainly because then his battery wouldn't drain so fast.
Well, I knew the Nike app wasn't working because it wasn't turned on in location services... and he didn't know we had enabled restrictions on his phone. I decided to tell him the truth - that we had turned on his restrictions so he couldn't make changes after he disappeared. To be honest I was anticipating a not so nice reaction but he didn't seem upset. I talked him through getting into restrictions, changing it so he could make changes to his location services and then turning on the Nike app. I then told him he should leave the location services on because it also allowed him to find his phone if he ever loses it and lock it remotely so nobody else can get on it. Not sure if he did though.
I woke up early this morning and was thinking about our conversation and me talking him through making the changes. There have been LOTS of times when both of my parents have phone me with "electronic" related problems and my Dad is great at poking his way through them with me over the phone - more than my Mom sometimes can, which surprises me because of the Lewy Body. There are times when he is so mentally sharp and clear - and it is those times when he is on the ball that make me feel so, so sad about him being in the care home. Don't get me wrong - I definitely feel he should be there and don't doubt that decision at all - I just feel sad because that's my Dad and when I talk to him or when we visit and he's doing really good, the care home is a reminder that he won't always be doing really good and as much as I have come to terms (for lack of a better word) with him being sick and that he's going to die - it's hard.
When Dad was in the hospital the first time after he went missing after a few weeks he started asking for his iPhone and we, as a family, weren't sure if he should have it. He had tried to sneak out of the hospital a couple of times, there was concern about him making long distance phone calls and he had also said a few times that there was no way he was going into a home - he was just going to disappear if that happened. My brother really felt that he should have it so we all agreed and he went through and checked his contacts and then my sister and I went through and enabled the restrictions - the main thing we wanted to do was turn on his location services (so that if he went missing again, we would be able to find his location if he has his phone on) and then NOT allow him to make changes. We went through his location services settings and turned off everything except for Find my iPhone - mainly because then his battery wouldn't drain so fast.
Well, I knew the Nike app wasn't working because it wasn't turned on in location services... and he didn't know we had enabled restrictions on his phone. I decided to tell him the truth - that we had turned on his restrictions so he couldn't make changes after he disappeared. To be honest I was anticipating a not so nice reaction but he didn't seem upset. I talked him through getting into restrictions, changing it so he could make changes to his location services and then turning on the Nike app. I then told him he should leave the location services on because it also allowed him to find his phone if he ever loses it and lock it remotely so nobody else can get on it. Not sure if he did though.
I woke up early this morning and was thinking about our conversation and me talking him through making the changes. There have been LOTS of times when both of my parents have phone me with "electronic" related problems and my Dad is great at poking his way through them with me over the phone - more than my Mom sometimes can, which surprises me because of the Lewy Body. There are times when he is so mentally sharp and clear - and it is those times when he is on the ball that make me feel so, so sad about him being in the care home. Don't get me wrong - I definitely feel he should be there and don't doubt that decision at all - I just feel sad because that's my Dad and when I talk to him or when we visit and he's doing really good, the care home is a reminder that he won't always be doing really good and as much as I have come to terms (for lack of a better word) with him being sick and that he's going to die - it's hard.
Friday, November 8, 2013
Remembrance Day
Things are going good. Dad and I have been texting again more often although we still haven't talked. He texted today asking if the kids were off school and said he talked to my husband last night. He wanted to make sure that the kids know their Great Grandparents fought in World War 2. He has always loved watching the war documentaries that come on around Remembrance Day. So does my husband actually - which reminds me that he wanted me to change our TV package for the weekend so he could have The History Channel. Still haven't talked much to my Mom or sister but that's not intentional anymore. It is amazing how much of a weight this has lifted off my shoulders and how much more free I feel. I know that sounds crazy but I think any of you have been in any sort of situation with a sick family member before probably understand how that feels. The one thing that has slightly changed is knowing that my Mom and sister are reading the blog at first made me feel like I should watch what I blog or how I word things. In the last entry I would start to type something and then stop and think about whether or not it would make someone upset but did end up typing what I was going to in the first place because the bottom line is that anything I type on here I would say in a conversation with them so what's the difference if they read it or hear it. Because of the lack of conversation I'm just assuming things are going good with Dad health wise - he certainly seems to be having more of a positive attitude and I pray that he really is feeling more at peace and not just putting on an act. It's been one month since he moved into the care home.
Thursday, October 31, 2013
The Power of Positive Thinking
Halloween. The kids had a blast tonight. My teenager decided to not go trick or treating this year and went to her friend's house to hang out and hand out candy. She is the one who LOVES anything chocolate so I was really surprised she decided not to. My Dad has always liked Halloween and seeing the kids in their costumes, asking about their candy hauls. He usually phones to talk to the kids - not this year though. We've only talked once since Thanksgiving - and that was the Wednesday after I wrote about earlier. We hadn't texted since that night either. I got a text from him on Sunday asking if we were at Church - we were just on our way there. He said to have fun and pray for him. I told him I am always praying for him. He said he loved me. I sent him some pics of the kids dressed up... and the dog. My youngest was a lego block, middle was a taco and the dog was a mermaid. (Yes, I bought a costume for our dog this year. I was at Winner's today and it was on sale for $4). We had a good text conversation. He asked how I was doing and I said ok - to which he replied that I could talk to him now because he was being very positive for himself and for others. I told him I started a blog, that it was private and I'm not using anyone's names. He asked what a blog is. I know he reads another blog written by a man who has had LBD for over 10 years now so I told him that was a blog and that it's sort of like an online diary but that I won't be mentioning any names. He said, "Oh ok." The tone of the conversation was good. I asked him if he was being positive for real or just putting on the happy face and he said he was trying to be positive because he feels that is the only way things will change. He is setting some goals for himself and wants to try really hard not to make it hard for my mom. I told him I was proud of him - because I really am. And I really do hope that he is trying to be more positive. Maybe his cup is getting closer to half full... or a quarter full at least. Baby steps right? I really do want him to get the most he can while he still has more good days than bad. I was looking at my oldest daughter's phone last night and saw a group text between her, my middle and Dad. I'm glad that they are texting. As grouchy as he can be, Dad has a great sense of humor and always teases the kids... it made me happy that they are having fun text convos with him. He went fishing the other day and sent them a picture of the fish he caught. I'm really glad to hear that he went out fishing.
Tuesday was 21 years since my Grandma passed away - Dad's mom. The funeral was on Halloween. Dad mentioned that in one of our texts tonight and that he misses her. My mom told me once that she would sometimes hear Dad talking to someone in the bathroom, bedroom... wherever... and when he came out of the bathroom once after having a "conversation", she asked him who he was talking to and he said, "My Mom." That made me smile. In the midst of this horrible disease that is going to slowly take my Dad is this amazing blessing. How wonderful it must be to truly believe you are having a conversation with your Mom like that. What we all wouldn't give to have a conversation with a loved one who has died. I know it is progression of the LBD but I didn't see that as sad at all. It actually made me happy because I know that must have been so awesome for my Dad. There is joy in all circumstances - but we need to choose to look for the joy, to find it. We need to praise God in the midst of our hard circumstances. LBD may be one of the curses, but God gave my Dad a blessing that day.
Tuesday was 21 years since my Grandma passed away - Dad's mom. The funeral was on Halloween. Dad mentioned that in one of our texts tonight and that he misses her. My mom told me once that she would sometimes hear Dad talking to someone in the bathroom, bedroom... wherever... and when he came out of the bathroom once after having a "conversation", she asked him who he was talking to and he said, "My Mom." That made me smile. In the midst of this horrible disease that is going to slowly take my Dad is this amazing blessing. How wonderful it must be to truly believe you are having a conversation with your Mom like that. What we all wouldn't give to have a conversation with a loved one who has died. I know it is progression of the LBD but I didn't see that as sad at all. It actually made me happy because I know that must have been so awesome for my Dad. There is joy in all circumstances - but we need to choose to look for the joy, to find it. We need to praise God in the midst of our hard circumstances. LBD may be one of the curses, but God gave my Dad a blessing that day.
Wednesday, October 30, 2013
Coming Clean... almost.
I talked to my Mom yesterday and told her I was blogging and I just sent a text to my sister-in-law to let her know as well. I started to text my Dad but have decided to phone and tell him about it instead. When I first thought about telling my family about it I honestly thought that my Mom would be the one who wasn't on board but she was actually very supportive. Now I'm kinda nervous to tell my Dad.
The one thing my Mom did tell me yesterday is that Dad has befriended an elderly lady at the care home. I guess she only speaks German and because of that barrier, doesn't have very many friends there - so Dad downloaded a translation app on his iPhone and has been having conversations with her via the app. I told you my Dad could start a conversation with anyone! The techie in me is so proud! Way to go Dad :-)
The one thing my Mom did tell me yesterday is that Dad has befriended an elderly lady at the care home. I guess she only speaks German and because of that barrier, doesn't have very many friends there - so Dad downloaded a translation app on his iPhone and has been having conversations with her via the app. I told you my Dad could start a conversation with anyone! The techie in me is so proud! Way to go Dad :-)
Monday, October 28, 2013
Cheap Therapy!
I've been on my iMac fiddling with the blog most of today. Last post for today... blogging has already taken a huge weight off my shoulders and I've felt better today than I have in over a month. PRAISE GOD!
My Dad
My Dad is 62 and was diagnosed with Lewy Body about 18 months ago but now that we actually know what it is and the symptoms of it, we think he's probably about 4 years into the disease. He also suffers from severe rheumatoid arthritis that has affected his auto immune system. Dad has always seemed more susceptible to getting sick - if something was going around you knew that he was going to get it. When I think of my Dad before any of this started happening I just think of him as happy. I have an awful memory for anything from my past but I do know that my Dad was (and still is) the type of guy who can strike up a conversation with anyone. He is so personable and friendly. That makes it hard now to see the behavioral changes; the moods, the anger, resentment... the lack of spark in his eyes replaced by tiredness. We know it's not really him but sometimes that doesn't make it any easier.
Truth be told my family doesn't know I'm blogging - I will tell them at some point but right now this is for me. I don't plan on relinquishing deep dark family secrets or hashing out family problems - I just need a place to keep friend's updated and vent out my own feelings throughout this ordeal. I guess I wouldn't say Dad is an overly private person. I honestly don't know if he'd be upset about me blogging and then my very next thought is if he does get upset, eventually he won't remember he's upset - and I'm not being sarcastic! It's just the sad truth of it. Throughout the past year I would have to say that my rock and buddy through this has been my sister-in-law. And I really should just type sister because if it ever came to me having to pick her or my brother I'd probably pick her! We are so lucky to have her as a part of our family. She is the most patient, kind, funny and caring person I know. We have had many laughs together because as she always says, "You can either laugh about it or poke yourself in the eye." Some think that sounds awfully insensitive but oh my gosh, if we didn't laugh our way through some of this stuff I think we'd have gone crazy by now and trust me, it's an awful situation all around but there really are some funny moments in the midst of all the madness.
Truth be told my family doesn't know I'm blogging - I will tell them at some point but right now this is for me. I don't plan on relinquishing deep dark family secrets or hashing out family problems - I just need a place to keep friend's updated and vent out my own feelings throughout this ordeal. I guess I wouldn't say Dad is an overly private person. I honestly don't know if he'd be upset about me blogging and then my very next thought is if he does get upset, eventually he won't remember he's upset - and I'm not being sarcastic! It's just the sad truth of it. Throughout the past year I would have to say that my rock and buddy through this has been my sister-in-law. And I really should just type sister because if it ever came to me having to pick her or my brother I'd probably pick her! We are so lucky to have her as a part of our family. She is the most patient, kind, funny and caring person I know. We have had many laughs together because as she always says, "You can either laugh about it or poke yourself in the eye." Some think that sounds awfully insensitive but oh my gosh, if we didn't laugh our way through some of this stuff I think we'd have gone crazy by now and trust me, it's an awful situation all around but there really are some funny moments in the midst of all the madness.
The Now
Dad moved into his room at the care home on October 7th. It is the only care home there and he is currently on the supported living side. There is staff there from 7am to 11pm and they are in charge of his medication but other than that he can sign himself in and out whenever he wants. My brother and his family live there. Both their boys play hockey and Dad loves to watch them play and understandably did not want to be placed in a home an hour or more away where he wouldn't be able to go to practices and games. I flew there at the end of August for a family meeting at the hospital because the doctor wanted a pow wow with everyone involved so we could try and figure out what Dad's options were. While waiting to board my flight home I decided to give it all to God and let Him take care of things. I needed to pull back from it all. Three days later we found out that there was a spot opening up at the care home.
We went there for Thanksgiving and it was hard. Dad is not happy to be at the care home and I really don't blame him. He's 62. Pretty much everyone else there is over 75. It's a really nice facility and there is a chapel on site that you don't even have to walk outside to get to. There are lots of activities/events planned and tonnes of things to do there. The resident manager is Christian and one of the nicest people I've ever talked to. You can tell that she genuinely loves her job and it is her goal to make everyone's quality of life the best it can possibly be for the stage they are at in their life. We got in around 9pm on Friday and Dad wanted me and the girls to come down for a visit so we did. And it was not good. In hindsight it probably wasn't the best of decisions to go there for Thanksgiving at all - I think we should've waited until Dad had been in the care home longer. I wonder if us being there actually made things harder for him. We got in the van to head back to my Mom's and my youngest daughter started crying while the other was quiet. Grandpa was being different and acting not nice. When we got back to Mom's about an hour later I wanted to pack up the van and head home. I have talked to Dad since and he said that it was never his intent to scare the girls and I completely reassured him that I know that. I told him that he has to keep in mind that the girls are older now and pick up on attitudes, moods and the blatantly sarcastic happy way you were talking about things when giving them a tour of the place. Both my girl's are pretty astute, the younger in particular is quite sensitive about other people's feelings.
The rest of the weekend was pretty good. It was so nice to see my brother and his family - both their boys play hockey. We got to see both of them play hockey and both of them scored a goal. My husband and I went to Church on Sunday morning and they had a lunch buffet there afterwards so we stayed for that. Church was good - worship was amazing. We've been there twice now and really enjoyed it. Sunday afternoon Mom and I went shopping with my oldest daughter. I had an appointment at the Apple Store to get my phone checked out (and ended up getting a new phone) and then we headed to Ikea. Retail therapy is always good. My sister-in-law's parents were in town and she made turkey dinner for all of us (it was amazing) and after supper we all headed out for a walk to see the "grandfather" tree (which reminds me of the Whomping Willow from Harry Potter) and we even got a family picture! First one since my brother and his wife were married 13 years ago and at that point only the girls were around! Dad put on his happy face and the kids didn't know any different... but we did. I noticed Dad was a bit slower walking, more cautious - his balance seemed off and he was was limping a bit.
A few of you have replied to the initial email or have spoken with me since I sent out about the blog and I really want you to know how much that means to me. I have such an amazing group of friends and you need to know that having a "group" of friends in itself is amazing to me... having a group of friends supporting, praying and loving me is beyond amazing. So thank you so much for your thoughts and kind words, the prayers - everything. I really, really appreciate it.
We went there for Thanksgiving and it was hard. Dad is not happy to be at the care home and I really don't blame him. He's 62. Pretty much everyone else there is over 75. It's a really nice facility and there is a chapel on site that you don't even have to walk outside to get to. There are lots of activities/events planned and tonnes of things to do there. The resident manager is Christian and one of the nicest people I've ever talked to. You can tell that she genuinely loves her job and it is her goal to make everyone's quality of life the best it can possibly be for the stage they are at in their life. We got in around 9pm on Friday and Dad wanted me and the girls to come down for a visit so we did. And it was not good. In hindsight it probably wasn't the best of decisions to go there for Thanksgiving at all - I think we should've waited until Dad had been in the care home longer. I wonder if us being there actually made things harder for him. We got in the van to head back to my Mom's and my youngest daughter started crying while the other was quiet. Grandpa was being different and acting not nice. When we got back to Mom's about an hour later I wanted to pack up the van and head home. I have talked to Dad since and he said that it was never his intent to scare the girls and I completely reassured him that I know that. I told him that he has to keep in mind that the girls are older now and pick up on attitudes, moods and the blatantly sarcastic happy way you were talking about things when giving them a tour of the place. Both my girl's are pretty astute, the younger in particular is quite sensitive about other people's feelings.
The rest of the weekend was pretty good. It was so nice to see my brother and his family - both their boys play hockey. We got to see both of them play hockey and both of them scored a goal. My husband and I went to Church on Sunday morning and they had a lunch buffet there afterwards so we stayed for that. Church was good - worship was amazing. We've been there twice now and really enjoyed it. Sunday afternoon Mom and I went shopping with my oldest daughter. I had an appointment at the Apple Store to get my phone checked out (and ended up getting a new phone) and then we headed to Ikea. Retail therapy is always good. My sister-in-law's parents were in town and she made turkey dinner for all of us (it was amazing) and after supper we all headed out for a walk to see the "grandfather" tree (which reminds me of the Whomping Willow from Harry Potter) and we even got a family picture! First one since my brother and his wife were married 13 years ago and at that point only the girls were around! Dad put on his happy face and the kids didn't know any different... but we did. I noticed Dad was a bit slower walking, more cautious - his balance seemed off and he was was limping a bit.
A few of you have replied to the initial email or have spoken with me since I sent out about the blog and I really want you to know how much that means to me. I have such an amazing group of friends and you need to know that having a "group" of friends in itself is amazing to me... having a group of friends supporting, praying and loving me is beyond amazing. So thank you so much for your thoughts and kind words, the prayers - everything. I really, really appreciate it.
Saturday, October 26, 2013
Consumed
I think one of the reasons my Dad has seemingly overtaken my life is because it's all that gets talked about. I've thought about blogging a few times but honestly, I really didn't know if it was my place to blog about my Dad and I still don't know if it is my place, but what I do know is that I need a place to keep my friend's updated. I do know that this whole thing is and my emotional reactions to it is affecting everyone around me. I have had been told numerous times that I need to take care of myself and to me, this is part of taking care of myself - I need to stop talking about "all things Dad" all the time and the only way I can see that happening is through blogging. I guess I am hoping that this will be therapeutic for me and I can start to breathe again because I feel like I have been consumed and swallowed up by all things Dad since July 17th of this year. I need to breathe again for myself, my sanity and for my husband and the kids.
I cry. I am a crier. And if I start talking about how I really feel I won't be able to stop crying.
The problem is there are no nutshell answers when it comes to Dad and the long story short answer is that things are awful right now and he's dying. The short story long answer is pretty messy. I am not doing very well right now. I am pulling away from my friends, I am pulling away from my husband. I avoid phone calls (incoming and outgoing) with my family because I don't want to talk about my Dad. After Thanksgiving I started pulling away from my Dad too and then he phoned the Wednesday after and we talked for an hour - it didn't go well and now I am avoiding him too. I feel resentful towards everyone and then comes the guilt because he's dying and I shouldn't feel that way.
So I will blog, I will continue to pray and hopefully through this I can find peace.
I cry. I am a crier. And if I start talking about how I really feel I won't be able to stop crying.
The problem is there are no nutshell answers when it comes to Dad and the long story short answer is that things are awful right now and he's dying. The short story long answer is pretty messy. I am not doing very well right now. I am pulling away from my friends, I am pulling away from my husband. I avoid phone calls (incoming and outgoing) with my family because I don't want to talk about my Dad. After Thanksgiving I started pulling away from my Dad too and then he phoned the Wednesday after and we talked for an hour - it didn't go well and now I am avoiding him too. I feel resentful towards everyone and then comes the guilt because he's dying and I shouldn't feel that way.
So I will blog, I will continue to pray and hopefully through this I can find peace.
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