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A vent; guilt, relief, and time management.
UpbeatWhiner
Posted: Wednesday, August 21, 2019 10:05 AM
Joined: 1/4/2017
Posts: 41


I write this sitting in Florida, a country not my own. I am sitting by a pool which itself is feet from a slow moving canal. It is a peace and a guilt.  

Mom has been going to a daycare program since about September. It was a relief to find it and them be able to accept Mom right away. I was taking on going back to school and I needed a safe place for her, somewhere someone would notice if she wondered off. Somewhere there would be enough activity for her as she gets bored easily. It was a blessing because we had started to notice some real decline during that summer. 

There was an issue with a bladder infection (I know you all understand and just cringed) and she never really went back to baseline after that. She has a medical issue that her doctor was slowly trying to change the meds for, because most seniors don't handle big med changed well. However she ended up in hospital. Then she had a TIA or similar issue. I say this is my opinion because it presented like a stroke, had a clear CT scan, and cleared on its own within 24 hours. They focused on the other medical issue, which did not have supporting evidence, in fact tests showed those levels at normal until they did things purposefully to aggravate it. Yes, I am still frustrated months later.

All this time Moms cognitive functioning was declining. Not so much her memory persay as her ability to understand simple things. Some of it made me scratch my head (hoarding dirty underwear in her closet), some of it made me cry in frustration (used toilet paper in the trashcan), some of it made me depressed (loss of ability to figure out a shower, how to wash her hands, and the constant movement). 

Her memory decline caused huge boredom. She couldn't focus on a game show any longer, which she used to love, so they stopped holding her interest. Puzzle books were too complicated at times. Word searches made her frustrated because they were full of 'words' she didn't understand. I would run out of patience for telling her they were mixed up so she could find the hidden words from the list below in them. They are not words, just mixed up letters. Then she'd look for the mixed up letters amongst the words in the list and eventually just put the book aside. 

I don't know if its the bad memory, short attention span, or lack of understanding what was going on around her, but she would fall into silence unless being actively spoken to. The minute you stop asking her things she would go silent. Like she did not know how to hold up her side of a conversation anymore if that makes sense. If I did not provide active activity she would sit in a chair and just stare at the wall. I know this because one day I decided to find out if my suspicion was right or not and just continued to work at the table while she stared at the wall. Three hours passed and she was still just sitting in her chair, awake, doing nothing. Other times it would happen when I was busy doing my work (I write alot) and time slipped by without me realizing she had put aside her thing and was sitting lost in her own world again. 

Other times she wouldnt stop moving. We would be sitting to eat dinner and shed get up for a napkin, even with one sitting at her plate. Then she needed water, then to use the bathroom. Then shed get someone else water. Then shed have to pour hers out and get new cold water. Then she would need to putter in her room and then something else. An hour would pass and her meal would be cold and she wouldnt have even finished half because as soon as her but hit the chair and she took a bite she'd be up for something else. The kids would take their plates into their rooms on those nights, I let them. I wanted to walk away too. 

We changed some meds to morning time and that seemed to stop some of the nighttime wondering and going through her drawrs in the middle of the night, but her screaming in her sleep and calling out never stopped. I ended up so exhausted I slept through it. 

My daughter tried to jump off a highway overpass so I and Moms sisters agreed it was time for Mom to live somewhere else. I cried people. 

I cried for Mom who has lost herself and will have to take a new scary step. I cried for me for losing Mom. I cried for my kids who have watched their grandma change. I cried because I didn't know if I waited too long or if I was giving up. And then I steeled myself to move forward as if I whole heartedly believed this was the best and only choice, even when I struggled and felt myself wavering inside. And I did people, I did. 

Mom was taken my ambulance, they suspected a heart attack. It started as burping, massive, long, exaggerated burping that would string together for ten minutes. She couldn't catch her breath, her chest hurt. A telephone line you ask a nurse for advice on called 911 for us. Her blood pressure was through the roof, so off she went. I called her sisters, we prayed she would pass. I know it sounds horrible. But mom is not mom anymore. 

She was just having really painful burps. A sip of water would start a string again. Embarrassingly loud and wet sounding to the point that the nurses in the Xray waiting area turned a TV way up trying to drown out the noise of them. Poor Mom. So we added an acid reducer and gas ex to her meds each morning. 

About a month ago we got the call that Mom had a room in the home we were waiting for, the same one she had been going to for the day program. We were told to expect six months to a year for a spot, but the call came only three weeks after doing all of the assessments and paperwork.  I was told they did a 'home rescue' after learning about our home life. My daughter and Mom both needed to be apart they decided or I would likely loose one of them. I can't say they were wrong. I am thankful. I am, I promise, but I think I also am still processing it. The call came on a Monday. I told Mom that night and we started packing her things. Tuesday I took over suite cases of clothing (I was told the night staff would label everything, and they did) and hung photos on her wall. She saw her room and said she liked it. We cooked a big meal that night and went through old photos. She moved in Wednesday. I went home and cried more. But she seemed happy. I skipped class. 

My children had been sharing a room, and on the advice of the staff at the home, we dismantled Moms room. The thinking is that when we bring her home for visits, family dinners and holidays, she wont she her old room and think shes home to stay and be upset when she can't. My daughter was looking forward to her own space, and her mental health issue gives her lazor focus, so for the rest of that week we went through moms things, decided what she could have at the home, what could be packed away in a storage bin, and what could be donated. A womans shelter got a huge supply of buisness suites, so theres a plus! 

I don't think I really processed mom being out. I was too tired and focused on moving rooms, cleaning, packing things away. I was snippy with my kids. I kept visiting Mom, short visits because I still hated the place. Two weeks went by and I realized how easy it would be to just not visit, why some people just never went. Generally at home I am multi-tasking three or more things. I was having to rearrange everything to go see mom because shes not right with us anymore, I can't multi-task the other things while talking to her. Shes only a few minutes away, imagine if it was an hour. It was like an everyday appointment I was too guilty to miss. 

I skipped a visit and nothing happened. I called the home and the nurses said she was fine, no fit. So pacing at the door. The world did not blow up because I did not show up for breakfast that day. She did not ask where I was when I showed up the next day. It was still summer vacation for my kids, things were not in routine. I think I have figured out the homes schedule now too, so I wont show up and get her dressed and ready for a walk just for a nurse to come in for shower day (oops). When the kids are back in school I think making a routine for myself to include visits and my own work, class time, and homework will be easier. I wont have to ignore the kids to see her because they will be in school. 

Moms sisters from out of town who have not seen her in 5 years came. The stayed with her all afternoon, then showed up to my house with mostly empty wine coolers in hand. Its not easy seeing, experiencing a five year change. Its one thing to hear about it, another to sit with it. One sister was called my daughters name the entire visit. 

My daughter had... an escalation of symptoms. I made an emergency apt with her psychiatrist and we came out with a diagnosis. One I saw coming, but hearing it said out loud... yes, this is it. Not a query, not a lets see in time. Written down in black and white... man that is a whole other feeling to process. She read the papers he gave explaining it to teenagers. She said it fit. The next day she said she still felt it fit. I think she was relieved. There is a name for it, so it means shes not alone, others are like her. Others have had lives and managed it. We went and baught the book he told me to. I read the entire thing that night. I have connected some dots and think I get my kid a little better.  

That was Wednesday. Last Friday I was done early, went and saw mom. I sat there in this depressing space, watching one woman who wanted to go home pace at the secure door. I watched one spirited woman hit a staff member in front of the granddaughter who was visiting (im not sure where her adults were, there didn't seem to be any around). The staff walked off with the girl I assume to find her people. I sat as mom told me all about the lunch she ate and then slowly went silent. I asked her if she wanted to go for a walk and she told me it was too cold to go outside today (it is warm still during the day where we are, only a bit of a chill on the wind in the night) so we went to her room where I tried to get her to play cards. She started off enthusiastic, I don't really follow rules, she plays a card whether its allowed or not I could care less. We did not make it through the game before she was back into falling silent and needing prodding. I hurt in my soul for Mom. 

I ended the game and suggested she go help clean up, it seems to be the only thing to get her out of her own head some days, physically doing something. The staff said they will get her to clean the tables with a went rag even when they are already clean. It makes her happy, she wants to be useful. 

I walked out. I went home and started laundry. I listened to my kids laughing and bickering over some youtube shows. I sat feeling numb. The new puppy pissed on the floor and then bit (okay mouthed, no broken skin) my hand as I tried to put on his leash. I felt numb. 

I felt numb. 

I came inside and said, pack a bag. The girls looked at me. One was like, is she serious? The other jumped knowing I do do spontaneous at in past it has been awesome. They had some issues packing, I said a carry on size bag each only and we would pick up travel size products. 

We picked up mom, filled meds that were too low to make the week, got the tiny travel bottles of things, we ate pie with mom and then took her back to the home. I used a website to find a place in some warmth where I could sit and see the water and my kids could swim in a pool without needing me to be with them, without having to take a hotel elevator down in a towel, without finding some weirdo sitting in the hot tube that follows your kids movements the entire time. We slept for a few hours and were in the car driving for a flight in the wee hours of the morning. It took an entire day to get here, one of the downsides of last minute bookings, there are no direct flights... but...  It is awesome. 

As we sat in an Ihop having a meal before trying again to find our rental (GPS in Florida is proving unreliable) my daughter remarked "Its weird mom, I keep looking over to ask Nan something, and then realize shes not here. She wont be here anymore." Its a loss, it feels like someone is missing. Because she is, she is lost to us, gone somewhere where we cant find her anymore. 

I feel guilty knowing I don't want her here. I wouldn't relax if she was. I won't list all the reasons why, you all know them. This is the first time I have really relaxed in four years. I woke up without a headache yesterday and marveled at it. My neck doesn't hurt. My kid had a bit of a meltdown, a hard moment, but I didn't have to shield her from someone who was trying to be helpful but was only making it worse. And we were able to instead shake it off and go jump in a pool. 

I write this sitting pool side, watching the fish jump in the canal, wondering if theres a crock in the inky black water chasing them. I miss Mom, not Mom of now, Mom of before. She would have loved this.  I'm relaxed. Wow. I am relaxed. 

The home, as scary as that choice felt, as depressing as it is to sit in it and know its because Mom is gone and no UpbeatWhinner, she wont beat this and come back....

The home has given my family a freedom it has been missing for a very long time. I hope we all can start to become ourselves again. Mom wasn't the only one who slowly lost herself along the way. I think I feel me coming back... I think I'm still in there somewhere. I think I can focus on finding her again and I will try to not feel guilty about it. 

(If you made it down this far, thanks for listening and letting me vent)

 


MinutebyMinute
Posted: Wednesday, August 21, 2019 1:16 PM
Joined: 6/11/2019
Posts: 193


Tears. I feel you. {{{{HUGS}}}

I don't have a family, outside my mom and many, many cousins. Watching my mom disappear over the past four or five years (most particularly THIS year) has been one of the hardest, if not THE hardest thing, I've ever done.

Mine still lives with me. "Live" is a relative term though. We coexist. Nothing really makes her happy anymore. That in and of itself makes me sad. Nothing much really interests her anymore. She sits and cries or walks around anxious much of the time these days. Occasionally, she can make it through a movie or show on TV. She might go for a brief walk. Or she may busily pull up weeds outside. She tries to feed the cat but I have to ensure the poor thing actually GETS food and water and that his box is clean, all things she used to do most of the time.

She still dresses herself and uses the toilet though the pretty disposables are now part of her daily life as incontinence is becoming more of the norm. She used to use the phone like a teenager. Now she will almost never answer it. Her cell phone? Let go months ago because she couldn't remember how to use it.

Every day is a new day and a day I wonder which skill she will suddenly lose. What thing (real or imagined) will suddenly frighten her. How will she pass the time today?

Glad you're getting away. It's good to get away for a while, especially to someplace that isn't work. I'm hoping to do that very soon. ENJOY yourself. You deserve it. This is a brutal disease that shows no mercy -- to them or to us.

Love and light sent your way ...

 

 


zauberflote
Posted: Wednesday, August 21, 2019 2:24 PM
Joined: 10/24/2018
Posts: 371


Oh, Upbeat.... you have been through SO MUCH. I don't know where to start but I do know that I'll forget things I wanted to say. 

First, so very very glad your DD is dx, still on land, and feels better knowing she's not crazy and not alone. I empathize on that one. 

I am so very very glad you made that very tough decision to give mom/Nan a place to live that is apparently perfectly suited for her. I find guilt comes with the territory, and I pray and get lectured by now-29-yrs-old-DS's therapist about that.

And boy do you know how to do the right thing at the right time. Florida, pool, no creepy strangers (when I was a teen at the beach with friends on family vacation, we called our creepy guy "Mr Peepers". Our dads knew about him, he knew that, mine had "scrammed" him once, and since there were 4 of us kids, one a boy, we were able successfully to tell him to scram. The world has changed for the worse since 1964.)..

Please enjoy every second of your family-nourishing vacation. You and kids DESERVE it. 


princesskimchi
Posted: Wednesday, August 21, 2019 3:08 PM
Joined: 8/14/2019
Posts: 18


This post. So many emotions. You're brave.
It's good to hear you can feel yourself coming back. There is a light after the tough choices.

Suziesb
Posted: Wednesday, August 21, 2019 9:30 PM
Joined: 5/22/2018
Posts: 191


It's hard no matter what decisions are made. Sounds like your mom is safe and cared for and you made the right choice. You need to focus on the safety and care of your kids. Good job. And I was cheering you reading that you whisked your kids off on a spur of the moment vacay...awesome!! I'm happy to hear you are relaxing. You deserve the self care, too. Take care, thanks for sharing. (I can relate to a lot of your feelings, as I'm sure many of us have shared the guilty thoughts. We are doing the best we can as caregivers to our LO.)  
I love my mom so much, but today she verbalized as she still can that she wishes she would just die already.   I can't help but wishing it for her, too, before she continues declining...

Livesbythebeach
Posted: Thursday, August 22, 2019 6:11 AM
Joined: 4/3/2019
Posts: 176


Upbeat- Good for you on getting away! I love it- it sounds like a spontaneous trip is exactly what you and your kids needed to "reset".  Your detailed oriented search for a hotel is exactly what I do- it's worth it so you can totally relax.  

You have been through so much- good for you to take steps towards healing and recovering.  Prolonged stress takes a toll on our minds and bodies!  I find swimming is so good for clearing my mind and taking away body aches and pains, plus I sleep like a baby after I swim. 

Your poor daughter, she was obviously in so much pain that she felt taking her life would be easier.  She is very fortunate to have a mother who is supporting her with her new diagnosis.  Mental health problems ARE manageable with the right medication, therapy, and support. 

Sending you hugs!

 


abartster
Posted: Thursday, August 22, 2019 6:44 AM
Joined: 5/9/2018
Posts: 83


You certainly have a lot on your plate.  But you are doing what is best for your Mom, you and your family.  I got my Mom into MC almost a year ago.  She was with us for @3 months and started trying to walk "home" (which is 15 miles away).  Doctors had told me she could not live by herself.  Because I wouldn't do what she wanted, she became somewhat aggressive.  One walk resulted in a fall down a hill into the woods.  Nothing broken (amazing).  But one day, I was told I was poisoning her and she was extremely aggitated.  Nothing worked and I called several places for some assistance/guidance.  I soon found that I needed to sign a "302" basically to have the police come and remove her to a geriatric behavior center.  I found a MC facility with a spot where she has her own "apartment".  After 20 days at the center, she was transferred to MC and has been there since.  I go, I visit, I take her out for lunch or visit relatives.  I often would question whether I had done the right thing.  Then two weeks ago, get a call that they found Mom on the floor and upset.  She was asking for me.  Nothing broken but when I get there, she sees me and starts crying.  Says she can't find them.  Find what?  Her parents.  When I try to explain that they had passed (@20 years ago), her mood changes to how dare I not tell her so she could attend the funeral.  Says to me "what is wrong with you?"  It was then I knew that where she is is the best place for her.  There are times I get from her that she likes where she is, the people are nice, food is good.  And then there are times that she is in a prison, it isn't fair that I made this decision for her, what right do I have, she should decide where she is going to live, I am no longer her daughter, she'll find another daughter - the list is endless.  I wake up in the morning wondering what the day will be like.  But I know that she is in the only place which will keep her safe.  I'm sorry in that this started to be something to boost you and ended up all about me and my mother.  You are not alone in this.  Dementia really sucks and it effects so many of us.  Hang in there.
Bakelite1
Posted: Thursday, August 22, 2019 12:00 PM
Joined: 12/26/2018
Posts: 13


I understand the difficulty of having your Mom in your home with your kids and making the decision to place her in a home, having done it myself about 5 months ago.  Congratulations for having done the hard work of coming to this decision, finding a place where she can be safely cared for and moving her into the facility.  This is incredibly hard, and requires massive amounts of work, both physically and emotionally.  I also understand the guilt at going away from your Mom on any kind of a trip after placing her.  The first trip that we took after placing my Mom was filled with guilt for me. I wasn't able to disconnect from worry, from the idea that I should still be caring for her in my home, etc.  I have found that it gets better.  I returned from a week away camping with my kids and husband just about 10 days ago, and felt absolutely blessed to be away from everything, the worry, the concern, the sense of dread that goes along with having a LO in a facility.  In her right mind, my mother wouldn't have wanted to impair my ability to enjoy time with my family.  She wouldn't have wanted to prevent her grandchildren from enjoying their summer vacation or from having free access to me to care for them.  

I also want to say how right the decision can be to place when balancing care for a parent with care needs of children .  Again, I think of what my mother would want, before dementia. Would she have wanted to negatively impact or damage her grandchildren?  Not in a million years.   I saw how caring for my Mom in my home was having negative impacts on my kids.  I understand that there are care environments in which a LO with dementia and children can be cared for in the same home without negative impacts on the children, for a multitude of reasons.  I just want to say clearly something that I think is extremely hard to say when making this decision:  impact on children should be the concern that we have permission to give the most weight at this moment.  

We are still adjusting to having my Mom in a MC facility, I still have guilt; I still grieve all the time, but I am happy that my kids now have a space to be loud, to not have me yelling at them to shut up so as not to disturb my Mom, to not have my Mom wandering down the hallway saying that she is dying while I'm pouring bowls of cheerios and trying to make school lunches.  They are able to be their loud, messy, funny selves.  And for that, I am grateful. 


Greg G
Posted: Thursday, August 22, 2019 7:18 PM
Joined: 2/8/2017
Posts: 920


Hey UpbeatWhiner,

You have succeeded.  You moved your mom into a place that is good for her and you got your daughter started on the help she needs.  Easy for me to say, hard for you to accept but you did a great job against steep odds.  I get a lot of what you are have been going through although I didn't do it concurrently.  

Dealing with our daughter's anorexia for 3 years of high school and one of college actually helped me deal later with dad's dementia first and then mom's.  (things I could not control)  Daughter ended up in a residence facility for almost 6 months.  6 hours away from us.  We left Buffalo between 6-7pm and drove to Toledo, OH every Friday.  Arrived home Sundays around 10-11 pm.  Monday's alarm went off at 5:45 am. It was winter time when we did this.  I hope your daughter sticks with her program what ever it is.

Take advantage that you do not have to worry about mom every minute of the day.  You have proof that the world will not end if you are not with her.  Have your visits with mom for your sake.  If needed, keep them shorter rather than longer.  Just spending some time with her is what counts.  Not necessarily what you do.  Other than telling her that you love her.

You now have more time now to be your daughter's mom again.  Do that.  And your other kid's.

Good luck and best wishes, Greg


UpbeatWhiner
Posted: Friday, August 23, 2019 12:05 PM
Joined: 1/4/2017
Posts: 41


Thank you to each of you for your kind responses. We have gone to an Imax movie, a murder mystery show, a 5 course sea food dinner, we hit a white sand beach, and swam in our pool here at midnight. I had to bring some work to do with me, but doing it pool side while my kids laughed in the pool was not a trial. I'm glad we came. We might do this again. Spontaneous works sometimes.