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  • A  blog is a personal journal of your daily life as a stroke survivor or stroke caregiver.  Surprisingly, countless members have called it therapeautic to write down their thoughts and to vent their frustrations.  You can make it private, just for your eyes or public and share your personal thoughts with your friends.  Why not try it, create your blog and start writing and see if it helps you.  

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  • HostSue

    Living on angel time.

    By HostSue

    I went to see the neurosurgeon on Tuesday. I was interviewed by a young Asian associate doctor and sent for a 3D MRI and angiogram, a brand new way of showing  the blood supply within the brain. The results were given to me by the associate and then I saw the specialist. It appears the aneurysm is larger and deeper than previously thought but at my age they are not going to operate as it would mean a full brain surgery. Coiling, one method of dealing with an aneurysm, is not an option. I think I was a little bit shocked by the news but taking into consideration I have had the melanoma op, the lymph node dissection etc I am not really a good candidate for another operation, especially brain surgery.   The specialist was fairly brutal because I think  he wanted me to know if I wanted an operation it had to be after I got a clearance from the melanoma specialist and that would take time. He said he knew I had a long wait ahead of me but not to worry.  Not to worry!!! So back to basics, no stress, no strenuous exercise, no * blush, sounds like no fun at all. So what can I do? As usual make some decisions, live a quiet life, let the future take care of itself, one day at a time. Hell's bells, what else is new?   So I have a plan. I have to just go on the way I always have, going about my usual routine one day at a time. Whenever I start to worry I will visualise that little bubble about the same size as the tiny diamond on my engagement ring. I will visualise a tiny angel sitting alongside the aneurysm, with her thumb firmly on top of it holding it in place. I know one day it may be that she will take her thumb off and the pressure will build up and life as I know is it will be no more. But It will happen to us all one day, in one form or another.   I went to Dissection Clinic down in Sydney today and there have been no changes in the past three months to the Lymphoedema, which is good news. In the interview I told her I had regained my confidence in walking down stairs which had taken a year to do and had recently started yoga again. She seemed pleased with the progress. No more interviews in any of the Sydney specialists rooms until next February. Hurray! I have survived twelve months since the melanoma was removed and six months since the operation to remove the lymph nodes. I have a lot to be thankful for.   My daughter took me to both appointments, I was so glad she had the time. We stopped for lunch today before we left Sydney and although it was expensive it was a happy time and one we rarely enjoy together. She also got the news today that the position she holds as Captain of the Cardiff Corps has been extended for another twelve months which is good news for me. If she had been moved it might have been a lot further away. Her husband's appointment has also been extended. Though he will now have a wider area to cover, which means a lot more time on the road. But she said he can cope with that.   On a less happy note my special friend who has the leukemia has now been in hospital for eight weeks and he now seems to be getting much weaker. I have been a regular visitor and it is painful to see the deterioration. With all the people  I  have ministered to in hospital you would think I would get used to seeing that happen but I never do. I am always an optimist, thinking with the right treatment, an adjustment to their medication etc they will be fine. But that is not always the case. So maybe there is more bad news to come.   There are signs of Spring now, birds building nests, green grass after a little rain, even some blossoms on the prunus trees in the parks we passed today. Hopefully the nights will warm up and we can start packing away the winter clothes. I have no plans, the future is a blank canvas. Don't think there is much fun and excitement ahead but who can tell? If I wake up breathing and moderately energetic I will endeavour to have a good day.    
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it finally happened..

So while I was driving at night, around 11:30p leaving work last night, I saw flashing red and blue lights in my rear view window.  As always I was very nervous because of  having a hard time seeing at night. So the black and white had EXTREMELY bright spotlight shining in my side mirror that pointed directly in my eyes. I already had a head ache and super tired. I just worked 3-11 after working all weekend.   The officer, or first officer of 4, yikes four, knocked on my driver side window and asked if I was drinking or doing illegal drugs. ( side note:: my father informed me that the area I work in and near is known for many arrests of DUI or DWI)  I put my license on my lap with my other documentation and of course when they walked to my window I dropped it and couldn't find it. I eventually found it between my seat, while he was standing there. I screamed " I found it" and didn't realize he was standing next to me.  I told him I had a stroke and due to SSDI not paying my bills, I had to go back to work and showed him my work ID. When they walked back to their car, I'm assuming when they ran my ID, it said I was a registered handicap driver and must have my heath reason .. I think? But ultimately, and thankfully, he walked back to me and issued a warning. I said I really wanted to go home and sleep.    My fear always has been I would be asked to do a sobriety road test and I know I would fail.. That was close enough to my nightmare.  

ksmith

ksmith

 

Through My Eyes

I was visited by Health Department regsrding a complaint I made againt a nurse for being an abusive bully insulting me and interfering with me getting to urgent care...where they called an ambulance to escort me to the ER and then I was admitted to the hospital.....so now that nurse still cares for me but cannot contact me so someone else brings my meds....... This was a complaint I made last year....so the HD said I got the name wrong...oops well lets recall who told me a wrong name around here.....   So the HD said it cannot be proven. I said I know. HD said well still complain because then if many complain......   OH I just zoned to my happy you cannot follow me here place. ........no one can prove what another does........   Then I admitted I took a picture when the 2 nurses were standing hands on hips in front of me....cannot prove...but to my memory issues it reminds me it was real not a dream...and I have hospital discharge sheet. But who can prove another's bad behavior.... Oh interviewing others? Some code of silence.   So HD asked if I was afraid. I said well this nurse takes care of me but not in my room. She parks her cart outside my door because that is where plug is.......I just do not like the nurses who are on some power trip......that are lvn anyway. But I deal..... it is history     My real problem Is that I got a text from my son who says for the last 4 years I complain I am alone and ........ok I do not recall exactly but the gist is I am wrong,selfish...and my inner voice chimed in...undeserving, ungrateful....you get the train here.   I was stunned. His opinion of me is priceless. I want his love and respect, yes still. How dare he address his mother this way. And I thought all was well. Ok he never visits and it has been months since he took me on outing...which was a 2 hr limit store excursion. Yes he has busy life. I want him to use his off time for his social life, not mine, of course.   But I do expect him to be there.for fun times visit,talk,eat. I am grateful for time he makes for me.    Where did this come from? I think it comes from his friend and that mom who hate caring for grandma.   So I am that now? Someone warehoused to die? And I have the nerve to want to be taken into live,society.   Well, lets see..I have never been invited out with any of his friends for some occasion, just like in real life,ones mom is not included. So how do I interfere?I do not. I do not expect much. I text. But most of the time I am misunderstood....that I have said something bad against him or hurtful. But he never calls. He prefers text. Great. But somehow I say one thing that becomes a disaster. He loves me. I hurt him. This situation. He helped, but he young, not expected to be able to do more. But then I read that and think wait, he is 29 now and looking back, I had 2 kids,took care of my mom...... Maybe root is something else. Families have bitter jealousys I do not have time for.   NEWSFLASH here, I have CPS. For the last 4 years. While I have been whining, needing reassurance I am not alone when I really actually am alone, I have had daily Pain,hourly Pain and constant unrelentless pain that actually honestly and in 4 dimensions of reality hurts.   I have endured losses. I do not need that laundry list again.   So if I am a pain in the ass, excuse me but I am not some sweet granny that grew old into an inconvenience and wants a call.   No, am I needy on my only son? Well I am in a SNF for life so how much more can I disappear? Well MY son said to put my phone away until I take a pain pill.   To me that translation is Hurry up and die already you old bore.   Oh and he is upset, still upset I may add, from a statement I made when I got home from hospital,had no filter or emotional control, which no one was expecting and I said something like I wish I had not had them. Now let me tell you about my struggle with infertility,miscarriages,and 2 high risk, one even told to abort but I did Not. SO everyone knew my children were wanted and my ex lost parental rights, so I devoted my life to both....and that could fill a book... ....yes one sentence kills a relationship I have apologized, and we traveled around we spent time....but now I see oh sure he went along,but nothing was forgiven or understood. Did he read ? I feel heartsick. I feel all that but then I feel I survive for myself. No not really It is always about my kids. I go on dreaming for it, that happy ending.   I am not going to the support group meeting tomorrow. I hurt. I should go,want to,but my leg burns,hurts to stand,buckles in pain.   But good news. There is always one piece somewhere. My electrode trial was approved so I will schedule that. I am ready.   And I have new coloring books from my fav author. Plus new set of good pencils. MY HAPPY BIRTHDAY!  I finally got what I never got after I ordered this with activies director. She gave substitutes. Ok nice.But... How did you ask? Well I did a survey and earned $$! I am doin another next week for Amazon gift card. In the meantime I will wait for pain thing to be done.   And being selfish feels good, i finally spent money on myself.  

SassyBetsy

SassyBetsy

 

Sunday reserved for my spiritual awakening

I am woman with still work in progress. I keep on learning, forgetting & relearning my lessons. Some lessons my life experiences has taught me are hardest to learn & I still struggle with those from time to time. Though I am blessed in a way, that since I gravitate towards those kind of people who can share their spiritual wisdom & get me on right path any time I struggle,.I have been surrounded  by amazing set of people who put me back on right path. So that brings amazing joy in my life. Anyway these Sunday some of us met & discussing  these big questions life throws at us like why I am here & what's purpose of my life. I was telling every one that how when good things happen in your life, we are likely to take all credit for it, but as soon as something goes wrong in life then you start questioning God & where is he, why did he allowed something so bad happen in my life. One of the argument was made, you need to put God first in your life, in good times & in bad times, he gets all credit. Hubby said wonderful thing while we were walking home, he was like why do we have to label any event as good or bad, events are just events in our life, we got to deal with them as they come along in our life. two very thought provoking statements which straightens me & my ego out.   Asha    

HostAsha

HostAsha

 

I feel so lucky to be married to nicest guy most of the days :)

I know I keep on saying this, but realizing something amazing about my hubby after 27 years of marriage is funny. That shows you how I am so  different  in understanding different love languages of people. ok back to my life. I recently realized something wonderful hubby used to do when I had just come in this country out of love, duty or fear for my safety, so I never paid attention to it & took it for granted.  Anyhow here is   story, after our marriage when I first came to this country, we used to live in New York city. It was 1990s, NYC was not as safe is as it is today. Anyhow in those times there were no cell phones to communicate, internet was not very ubiquitous  yet.  I used to take graduate level courses in university in new Jersey & we did not have car so I used to take public transportation so none of us had any control over its reaching time schedule. but on my class days he would always be there waiting on subway station to take me home, since walk home was not very safe in the evening. In my own frustration of spending few hours in public transportation to reach home, I don't ever remember wondering how long did he have to wait for me. Though recently I realized it while talking with old friends about old struggling days, & light-bulb went on, that hey asha do you realize how lucky I am to be married to such a steadfast, dependable guy. So had to share here, so I never forget   Asha    

HostAsha

HostAsha

 

It was a hard month

Sometimes I take the hard decisions and accompany someone on the journey to death. It is something that I was trained to do as part of my Chaplaincy training. This time it was more difficult though as it was someone I knew well, the man I went out with for a while. Lyn and I broke up in November 2016 and four months later started a friendship that lasted till last Thursday when he died. He had twelve weeks in hospital and it was hard to see him slowly deteriorate and probably during the last two weeks the quality of life was no longer there.    I will really miss him, he was a great conversationalist and we talked for hours over cups of tea and across cafe tables. Once I accepted that friendship was all he could manage because of his ill health we became the best of friends and I am going to miss him a lot. The funeral is on Friday. I have met all but one of his children and step children so will  feel comfortable being there. I do go to a lot of funerals anyway but the closer I am to the person the harder it is for me to not be an emotional mess.   Apart from that I have been doing some gardening, preparing for summer by doing a little Spring cleaning. This week I have Trevor and Alice visiting so we have been out most days. Alice loves going to the beach even though the weather is still cool and the ocean temperature cold she has been in doing her version of swimming. Today we went to an area with a children's wading pool and she loved it, she palled up with a girl her own age and they ran around together, a great way to burn energy and keep warm.   Yesterday we spent the day with Pam and her three children and it was great to seen the four of them playing  together. The boys play games Alice can join in and understand with her being so much younger they have to be gentle with her. I think being with cousins is a great thing for Alice. Unfortunately with major exams ahead for Christopher and much to do Shirley and family won't be coming down before Trev and Alice go home. A pity as she enjoys their company too. I may see them next week.   The country is still very dry, Trev said kangaroos, emus, goats and cattle are competing for what little grass there is and carcasses litter the roads. Drought is heartbreaking for all our country farmers and my Lions Club among many others is collecting money and goods to send to the country to support farmers and their families. It is probably too little, too late but we need to show them we care about what is happening to them. After all we really do rely on the farmers for the food we eat and some of the materials for the  clothes we wear etc.   The year is flying  by already people are asking about my plans for Christmas. I never know what I am doing this far ahead. Shirley is not moving for at least another year so that is good. I will probably spend Christmas with her family. There is a lot to get through before then. I hesitate to make plans, in the past so many things have gone wrong that for me planning too far ahead seems crazy. Just have to wait and see what happens.

HostSue

HostSue

CARDS MISSING

I play cards with a 96 yr old WWII vet who exercised women on base. She won a silver medal in diving at olympics. The local papers toot her praise. She is athlete and scholar with phD. She now is hard of hearing and losing sight but she is sharp. She plays cards always. Before meals....she plays Solitaire or plays Rummy with others. She counts cards and knows when one is missing at end od play. She could catch a cheater.  She taught me to play double solitaire. When we see eachother we both smile. And go play. For hours. Until mealtime.   I talk about her often. She is alone.Her husband passed. No children. But friends come visiting. Bring fruit or desserts.   Decks of cards go missing. For years i am here. Samne thing..Where is her cards.   She comes to my room wanting new cards. My purple set is worn out old but goood. I WONDER. And I ask activities to give her cards. Sometimes yes others they say no cannot keep giving herr cards. I get it.   So my friend and son give me cards for her. I even gave her a card box. Gone. Then a drawstring bag with 2 new packs. Her name everywhere. GONE NOW. in a month.  You should see her face. A lost soul. So sad. Misery. And she comes to my room. I give her new cards. One or 2 packs. Ok some get worn out. She tells me. I get it. But the lost ones. We never see others using cards. No one else here is. But i say ok I feed the thieves and then she happy she gets to play.   My son bought another box of cards again at Costco. 12 packs. Ok one year. New cards every month. I showed her a photo and said do not worry. I have cards for us. Her happy smile said it all. Then she pointed at her opponet. Back to the game. She tells me when the deck was missing 2 of hearts. I said save the pack for scraps. Here is new box of cards. I understand. ALL cards count.   Who is stealing cards here. Ok she may toss an old pack. But not all new things and cards. No one cares or knows otr sees evidence   Ok seriously the police went to her room. Her friend reported that her clothes and stuff went missing. She always wears a watch that winds. They replaced it a few times. Frustrated at theft here and lack  Of reverence.  I lock my stuff. Carry tot bags. Laugh but I not lose much. Some yes. But all replaceable   My son promises you will always have cards to play with.   This time i  will keep receipt and write it on a possessions intake. I will give them away if needed but if all gone then someone will replace it.   Ok social worker say if you give or loan to her then no not replace the box of cards. I furious. Injustice. But aI give her a new box. My son says cards are cheap.he will buy more. So a couple of times I play each week as I feel good.   My son bought a new box of 12.he sent a text photo.I showed it around. I never see otherds with cards   A mystery. Buy my son is a saint. When i see him he will give to me. I have 1 pack left of last box. Red and blue are for her. I assure her. Never worry. You will not suffer nor be without. I pray for the thieves.  Even police reports do not protect us.   Ok my cell phone is safe but not our cards.   Dumb. But she is happy playing cards. I get anggry. So I help.    

SassyBetsy

SassyBetsy

 

Being Taken Seriously

111I told my driving company do not send me a lift because I have vertigo. I guess when I topple off when I get dizzy they will take me seriously.   I fall asleep. Whenever. In public. While eating. So after passing out in my bathroom they need to watch over me.   They are saying it is the drugs making me sleepy. Plus I need more rest. SO I climb in bed and nap. But then I am lazy right? Cmon.   I need my pain med on time. Yes I am on SO much. I go a bit batty calling out in pain. They need to wake me. It hurts. So wake me so it not hurt later. I need that. It not make sense. They not take it seriously. Like ok just behave. Be nice. Be good.   I cry. I hurt. I pray. Over and over. Same thing. So tired.

SassyBetsy

SassyBetsy

 

The Monster of Stroke...What I See After Battling One

I came here this morning to share something happening in front of me...it affects my stepmom and her ex-husband's family who she has remained close to. Life happens sometimes in a way so beyond what we can control. My stepmom's ex brother-in-law has been ill the past two months and having serious heart issues. Eventually he needed heart surgery and when he was in the middle of it a clot formed in the circulation machine that traveled to his brain and caused a massive stroke. 😔 It kills me knowing that sometimes when we are doing things to get better that a stroke can throw itself in the mix. He was given low percentage of recovery and he survived. It was just a month ago. As a survivor I see and feel what another is going through...it's palpable. Not just from one side but I see both...survivor and caretaker. Not perfectly but well enough. He is a shell of his former self, incontinent, immobile, has CPS...even though he is there...inside...unable to communicate to those he loves. Here is a small amount of family history for this gentleman...he has 2 sisters both of which have had cancer and one is still fighting, he has a brother with dementia, and his other brother passed several years ago. They are probably all in their 70's...age is sometimes not kind. The one sister who has already beat cancer has been his caretaker but she just can't do all that he needs. She lives in Florida but has been here with her family several months during several difficult health issues from all around. I know she is exhausted in so many ways. She has told my stepmom that she is responsible but she has also told her how bad she just wants to go home. It's her home. I know that both can only do what they can do and as much as we feel responsible it can't be everything. The sister is impatient, accusing medical staff of not working on what he really needs like: PT for his legs so he can become mobile again instead of PT for fine motor abilities which he lost. I know she doesn't understand but she told my stepmom that they need to work on the things that will get him better and she can go home. I understand...breaks my heart but I do. During all of this, her brother sitting, laying, quiet, agitated, sometimes incoherent but aware. Having to watch the world move around him like he is invisible. He has CPS and is being treated temporarily with pain meds for now but his sister is adamant that they not give him this kind of med I mean he had a stroke he didn't break his leg. She doesn't know. He is still receiving pain med but he is still suffering constantly. Why is he crying all the time? Why is he agitated? Why can't you fix this? She doesn't know. God bless the therapists trying to help him get better. They don't have it easy in many many ways. The sad truth is that no one does. All I can do is pray for all of them...say some positive words that I hope reach the family and the therapists. I am mad at STROKE!!! Just plain angry...You stupid, unforgiving, unmercifle stroke!!! You are a monster!!! I hope so much that this family and those helping to fight kick your butt!!! I can't say anything else...except please take the time to research and see it for what it is. Learn patience because stroke will take and take and take. Educate others. Forgive those who don't see...Forgive those that do...bless those that fight for both. 

HostTracy

HostTracy

 

Noticing Something About Myself...Not Sure How I Feel About It

Has anyone said to you, "It's all about you.". I have had this statement said to me numerous times. Today I have been thinking...Do I make others feel this way? Am I egocentric? Do I lack empathy or maybe sympathy? You get the picture I'm sure. There are things I have noticed about myself since the stroke: I talk a lot about myself and the stroke or stroke effects left over. I get on my own nerves sometimes. There are certain things that I feel indifferent about. My stepmom hoards (cleanly but hoards). It's caused her issues in the recent past when her mother passed. She hasn't been able to let go of her things whether they are useful or not. So much so that she pays for 3 storage units to house all the items because her house is full. (Remember I live with my dad and stepmom for now due to financial reasons.) She also was diagnosed with hyperparathyroidism about a year and a half ago. This caused her to lose calcium and vitamin D from her bones and caused several hairline fractures about her lower legs, ankles, and foot area. So she has had pain, surgery to remove three of her 4 hyperparathyroid glands and the last year to recover and build her calcium and vitamin D back up. The problems I see is that she keeps anything and everything and can't let it go besides true filthy trash. Like she rinses and reuses Ziploc bags, has an insurmountable amount of "stuff" that is buried on top of each other that is never used, has like 10 China cabinets full of glassware, trinkets, ceramic anything, things that she had "collected" through the years, all the curtains, sheets, clothing, etc. that she has had over the past 35+ years and all that anyone will give her, out of date beauty and Avon products that she refuses to get rid of and says they are ok and she plans on selling them, honestly the whole house is a trip hazard for me and wrecks havoc on my overstimulation issues, the downstairs is so full that there is a walking trail from room to room. Anyway, I can't or won't help her because I get severe anxiety and she micro manages every move I make. She got upset with me for throwing away a bar of Phels Naptha soap because it was green and cracked and just gross. It was probably 20 years old. You can still but it. She said she could have sold it. I am writing a book here, sorry. She also moans all the time like every 10-20 seconds, "uh, uh, mm, oh, oh, ooh, ooh, oh my gosh, mm, etc." over and over constantly. Especially when someone comes into the room she is in. The doctors have told her in the past to stay off her feet, be careful and don't fall, no lifting, and she does it all. She has been on opioid pain killers for over a year. She's had 7-8 MRI's. Refuses to do what her doctors have said. Actually her levels are back to normal. No matter what else, I can't seem to find I guess sympathy for her. I have a tendency to get agitated with her and get on a soapbox and fuss. I have noticed recently that I avoid noticing her grunts and groans, self mumbling, negative self talk, just everything. Granted I still talk about my stroke effects, sometimes using them as examples of how to "accomplish" things. I am getting way overboard in my explanation. I also notice that I speak about my stroke effects to many others I am close to all the time. I have to make myself stop. I don't really know what I'm trying to say...I'm sorta lost right now...my points are gone.😕 I'll just end with do any of you experience moments of egocentric behavior? lack of empathy? lack of sympathy? a more than what I Feel is normal preoccupation with stroke and self? Does anyone else feel like this toward you? Do I think its all about me? Confused...

HostTracy

HostTracy

 

I love life with all its lessons which is making my life so much meaningful & fun

As you all know by now I enjoy & love my life including all lessons & blessings that come my way. Recently we reconnected with our spiritual group which I was active before while taking kido to his indian languge classes & vedic hinduisim classes where they were learning  about two epics Ramayana & Mahabharata of India. where one epic taught them about how to be noble human being so what we should strive to become by following God ramas footsteps,  & other epic taught them what we should not do & in one of the epic lord answered student all questions we encounter in our life journey where you question all those deep questions of the life.   So anyways after kido grown up  & we had lost touch with this  elite group which are full of learned intellectuals & now accidentally we reconnected again & I feel my life has become so much richer due to interactions with highly intellectual people. I feel so blessed to be surrounded by some classy people.  learned something so  interesting yesterday which wanted to write down so that I don't forget in flurries of living life. one of the interesting thing host talked about is how to  worship God. & one of the example used was like how river forged their path & go through some difficult terrain & pave the way & finally merges into ocean by shedding all their identity in process of finally merging into ocean.  that's how we should be worshiping God.  I know I still need to work on my ego & shed that. I realized I am blessed & can't take any credits for anything in life. Though I am so thankful for people, books & everything & everybody who has en lighted my life,  for that I send big thanks & love to the universe.   Asha  

HostAsha

HostAsha

 

It is Done.

William passed yesterday 9-18-18 at 1:06PM.  William had been in hospice for 1 month.   This has been the longest month of my life.  I am so relieved that the vigil is finally over.  Here it is 2:40AM and I am up.  I am so used to getting up and checking on William. I want to thank all of you for being there for me. I want to share that the stroke board has been a lifesaver for me since William's stroke 10 years ago. I would suggest that anyone who needs hospice utilize it.  I thought that I was getting hospice in place early and I used it only for a month.  They provide a wonderful service.  They enabled me to keep William at home and let him die peacefully at home.  When I needed more help they gave me more help.  I started with help 3 times a week and ended up with help twice a day , every day. This month has been a vigil that I am glad is over.  When William stopped eating and drinking, it became a matter of time. I have wonderful friends who live around me and were able to support me through this time.  I was able to call upon them to be with me when I was afraid to be by myself.  I do encourage you to reach out for help when you need to.  Do not make yourself travel the journey by yourself. I know that many caregivers have traveled this long road with me.  What amazes me is the accolades that I get from everybody about the way that I cared for William.  I am called a Saint, an amazing person.....but I know so many from here that have done the same. So many of us have devoted our lives to our loved ones.   William's death brought closure to his estranged children.  They were able to see him in his last days.  Miracle of miracles who was coherent and able to speak with them.  He was able to see his ex-wife.  Life is amazing. Now onto the next chapter in my life.  What is going to happen? I went out to dinner with 3 of my friends last night.  It was so good to get out of the house.  Friends are wonderful.  I will be having lunch with another bunch of friends today.  My old YMCA bunch.  I have my trips to California to look forward to in November.  The quilt festival in November. I just got off the phone with William's cousin.  It was nice to reminisce.  I just want to thank everyone for their support.  This board has been a Godsend to me.  Thank you.    

ruthwilliam

ruthwilliam

 

PAM'S PAIN PRECEPTS

PAM'S PAIN PRECEPTS 1.  Never touch my leg. It burns next to the eternal yule log. I have been branded by the touch of others. But with permission all is well.   2.  I feel stabbed in my leg, calf or foot. I walk slow because it seems like butcher knife follows me stabbing me in mý calf.   3. Wake me for pain pills or  prepare for me to wail for for hours until the next dose.   4.  Sometimes I just need to color all night. My symptoms hurt.   5.    Sometimes the covers are too heavy and I call out for someone to remove them. My leg burns or electrical zaps consumes it.   6.  I will want to get out of my pants as soon as I can. I love clothes but now I only harem pants or super soft material.   7. I will do PT according to what my body can tolerate tomorrow not today. My pain does not hurt much now but later I will pay.    8.  Allow me to sleep until the pain subsides. Just save my food.   9.  I need my pills on time or early if I previously too an earlier dose.   10. I am probably addicted to these pain pills but I have constantly been in pain since my stroke. This is chronic pain but complex regional pain syndrome is more than intermittent pain.  It is CONSTANT.

SassyBetsy

SassyBetsy

 

A bed sore

It has been three weeks.   I cannot believe it!   A bed sore!   William has never had a bed sore.  But this just lying on the bed for 3 weeks has done it.  I have been changing the underpad often.  It is difficult to change by myself.  I have called hospice and informed them that I will need help twice a day to change and clean him.  They have agreed to do that.  It is 3:28AM .   I have been up since 2AM.  I got the kitchen all cleaned and cleaned the floor of the living room.  William is usually up this time of morning.  Thankfully he is sleeping peacefully.  When I changed the underpad.   He  asked for a sip of water.  He had a couple of swallows. I am just praying that he will go peacefully before his skin deteriorates more.  The CNA comes and bathes him and I have to be the one that is looking for that.  It started out as a skin discoloration.  I have put a pillow under his bottom to shift his weight. This morning his eldest son will be coming out to say good bye.  They have been estranged for over 25 years.  I do not know how responsive William will be.  But, this will be closure for his son.   I hope that perhaps this is what William has been hanging on for.   The chaplain was concerned that perhaps  I am not ready.  But,  I do feel that this will be a relief.  I hate to see him just lying there.  Yesterday and the day before.  He kept asking to be let out of this bed.  I tried to explain that I could not safely transfer him.  I did feel so bad.  In the past  I would move him from the bed. It is strange the nurse wanted to check his heels for bed sores on her last visit.  But, she did not check his bottom.  I remember my son telling me to always check his backside for bedsores.  He said that nobody really looks there. William is sleeping so peacefully. I am so used to waking up and checking on William.  I wonder if perhaps I will be able to sleep through the entire night without waking up to check on William.  Well, we shall see. I did buy tickets to go to California over the Thanksgiving holiday.  I will spend the holiday with my son.  It is so strange to make plans again.  I am so used to staying at home and taking care of William and the dogs.  My friends will take care of my dogs for me.  It will be strange to be on a plane again.  Imagine it has been 10 years since I last traveled. I wonder if my minimalist idea will really hold.  I plan to shedding a lot of stuff for my move.  But that will be in year or so.  It is so strange to think of life in the future. Two days ago the hospice nurse thought that William would last thru the night.  But,  he is still here with me.  Everyday,,,I wonder.  He has lost so much weight and looks gaunt.  This is a fellow that has always had trouble with his weight. A friend of mine told me that I should cross fold a sheet and lay it under him.  This would help me to turn him.  I will do that when I have the nurse come in today. This morning he has been compliant and let me turn him by myself.  Maybe he is getting too tired to fight me.  I have scheduled a nurse to come out tomorrow and a CNA.  I will call them again on Monday to make sure that they have the same thing set up for the week.  Who knows.   I may still need all of that help.  

ruthwilliam

ruthwilliam

 

The end is near.

This is a difficult time.  I thought that I was getting hospice involved early.  But, William declined rapidly.  My best guess is that William may pass today or very soon.  I was so afraid that I would get up and find William gone.  I kept getting up every hour.   I am not doing my ritual gym thing this morning.  I want to be close by.  He is calm and peaceful.  He is not agitated like he has been. I actually did go to the gym..  Just later. This will be a long and difficult vigil.  William is now resting peacefully.   He complained that his foot hurt him.  I offered him some pain medication which he refused. I am blessed with wonderful friends.  I have had calls this morning from friends that have offered to sit with William and give me a break.   I will take them up on that.  I need to get to the gym and work off some of this nervous energy.  But, I have the hospice nurse coming out.  I do not know when she will come.  I sent her a text.   I need her help in changing the wet underpad.  Hospice has been really wonderful.   I am able to keep William at home with their help.  He has been in and out of sleep all last night.  I will now have William in Diapers.  This will hopefully make it easier on me to keep William clean. The bed control is not working.  I will have to call hospice and have them send somebody out to fix the control.  William ate 3 teaspoonfuls of applesauce this morning.   He did not know what it was.   I was able to take the dogs out for their little morning walk.   I will be waiting around for the hospice med drop off.  Last time they said it was from 8:30 AM to 10AM.   I will make it to the gym after 10AM.  then I have a friend coming out at 3PM.  I am spending more time sitting next to William.   I am not going upstairs and sewing.  I just don't have the concentration to do that. Well, William rallied and was more alert and did not have that funny breathing the next day.  This waiting is not a fun process, but just part of life. I really hate deaths at this time of year.  Thanksgiving and Christmas follow..   I am trying to think of what I plan on doing.  It has been just the two of us for long.  I may travel to my son's, tickets are not very expensive now.  But, I have 3 dogs.  Friends will take care of them.  But, I still hate to leave them.   I still need to ponder that idea. I started this blog two days ago.  Wm rallied and is still hanging in here.  It is 2AM Sat. 9-8-18.  He is up and responsive.  Calm and peaceful.  Hospice sent somebody and they fixed the bed.  It was actually my fault.  The plug is connected to a wall switch.  I had the switch in the off position.  The guy said that the outlet was not working.  But, I didn't tell him.  It actually is working, I just had it in the wrong position.  My friend gave William such a wonderful gift.  She came out to sing for him.  What a marvelous voice she has.  She sang hymns to him.  It was beautiful.  The gift of music is wonderful that she shared it with us. Today the CNA will come out to help me bathe William.   I will head to the gym early and be home to await the day.  It is so nice to have hospice to call when I need help.  I have been told again and again that is amazing what a job I have done with William for so many years.   I know that other caretakers have done the same.  But,  from the comments,  it is not the norm.  They have all said that William is so blessed to have been taken care of so well all of these years.  I have been privileged to have been able to do what I have done.  Let me post this now.   

ruthwilliam

ruthwilliam

 

Manic Monday

Well Monday I go back to work for the first time in 9 years. As we all know, living on Social Security and single, is very difficult. It is so expensive to live in New Jersey, or any where for that matter. Don't get my wrong, I'm thankful for what I do get but it's so tight. I know when I finish with orientation, two weeks 70 hrs., I'll go to part-time so I'll have down time. I've been trying to stay busy everyday to get adjusted to staying focused and that hasn't really gone as I  hoped. I'm good for a few days but after that I completely shut down.   I know I sabotage myself by pushing back on things, I know I do it and still I get worried. My head, on today it has been raining, feels like you've been on a tire swing and spun super fast and now you're trying to walk. I often call it my A-HA walk. in the video he bounces back and forth on walls. I know I just have to do my best and I know once my air ducts and/or AC unit cleaned or new, I'll feel better. Breathing in mold, as I have for the past 4 years causes chronic fatigue ( on top of the fatigue I already have).. I'll put my best foot forward.   🤞🏻

ksmith

ksmith

 

Living on angel time.

I went to see the neurosurgeon on Tuesday. I was interviewed by a young Asian associate doctor and sent for a 3D MRI and angiogram, a brand new way of showing  the blood supply within the brain. The results were given to me by the associate and then I saw the specialist. It appears the aneurysm is larger and deeper than previously thought but at my age they are not going to operate as it would mean a full brain surgery. Coiling, one method of dealing with an aneurysm, is not an option. I think I was a little bit shocked by the news but taking into consideration I have had the melanoma op, the lymph node dissection etc I am not really a good candidate for another operation, especially brain surgery.   The specialist was fairly brutal because I think  he wanted me to know if I wanted an operation it had to be after I got a clearance from the melanoma specialist and that would take time. He said he knew I had a long wait ahead of me but not to worry.  Not to worry!!! So back to basics, no stress, no strenuous exercise, no * blush, sounds like no fun at all. So what can I do? As usual make some decisions, live a quiet life, let the future take care of itself, one day at a time. Hell's bells, what else is new?   So I have a plan. I have to just go on the way I always have, going about my usual routine one day at a time. Whenever I start to worry I will visualise that little bubble about the same size as the tiny diamond on my engagement ring. I will visualise a tiny angel sitting alongside the aneurysm, with her thumb firmly on top of it holding it in place. I know one day it may be that she will take her thumb off and the pressure will build up and life as I know is it will be no more. But It will happen to us all one day, in one form or another.   I went to Dissection Clinic down in Sydney today and there have been no changes in the past three months to the Lymphoedema, which is good news. In the interview I told her I had regained my confidence in walking down stairs which had taken a year to do and had recently started yoga again. She seemed pleased with the progress. No more interviews in any of the Sydney specialists rooms until next February. Hurray! I have survived twelve months since the melanoma was removed and six months since the operation to remove the lymph nodes. I have a lot to be thankful for.   My daughter took me to both appointments, I was so glad she had the time. We stopped for lunch today before we left Sydney and although it was expensive it was a happy time and one we rarely enjoy together. She also got the news today that the position she holds as Captain of the Cardiff Corps has been extended for another twelve months which is good news for me. If she had been moved it might have been a lot further away. Her husband's appointment has also been extended. Though he will now have a wider area to cover, which means a lot more time on the road. But she said he can cope with that.   On a less happy note my special friend who has the leukemia has now been in hospital for eight weeks and he now seems to be getting much weaker. I have been a regular visitor and it is painful to see the deterioration. With all the people  I  have ministered to in hospital you would think I would get used to seeing that happen but I never do. I am always an optimist, thinking with the right treatment, an adjustment to their medication etc they will be fine. But that is not always the case. So maybe there is more bad news to come.   There are signs of Spring now, birds building nests, green grass after a little rain, even some blossoms on the prunus trees in the parks we passed today. Hopefully the nights will warm up and we can start packing away the winter clothes. I have no plans, the future is a blank canvas. Don't think there is much fun and excitement ahead but who can tell? If I wake up breathing and moderately energetic I will endeavour to have a good day.    

HostSue

HostSue

 

Another Late Night With My Thoughts and Stuff

So here I am. It's 11:23pm and I'm fidgety, awake, and drowning in needless thought. I'm in a state of anxiety for what I feel is no reason. I can't sit or lay still. I am weirdly hungry like ravenous and I just want to eat again and again...but nothing satisfies me. I lay my head down on my pillow and then pick it up then lay it down again over and over trying to find a "comfortable" spot. So now I'm sitting up. LOL sorry if this is boring but I just need to get anxious movement and thought out of me so I thought blogging would do the trick. It will not in the least hurt my feelings if you click out of my ramblings. Just a warning lol. I am also cold and then hot...back and forth...sometimes all my cover on and it feels like even my bones are cold. So I thought about taking a hot bath. Too much trouble says my head. Noises tonight have been particularly irritating...like my step moms cane tapping the floor as she walks or even my dads cough to clear his throat (he has lung cancer...what is wrong with me). I feel an uneasiness. Hmmm where. My fingers, my stomach, my feet, of course my head, my ears, my eyes, my scalp and hair, my legs and arms all feel strange. My throat and esophagus yep feel weird. I just want to be asleep. I have been looking at this weighted blanket it's supposed to help with anxiety. I just might try to figure a way to get one. I've been reading everyone's posts and trying to keep myself busy mind and body. That way I'm choosing what I do and think...make sense? I am going to look for some more sleep and meditation music maybe that will help. Sigh I know I should be thinking positive, being grateful, putting worry away, increasing my inner vibration, learning acceptance, etc. etc. I'll tell you though, anxiety (clinical General Anxiety Disorder) can get in the way of all that. I hear comments from those around me like "just stop worrying" "you can't think like that" "you just need to get out of the house and do more stuff with people" "we all get anxiety sometimes it'll go away in a few minutes". Hello...walk in my shoes tonight and then we can talk. It doesn't help me. I'm not whining about it I just am being truthful. It is what it is but it sure gets on my nerves.  Ha I made a funny. Ok this is TMI but even when I pee it's like a nervous pee. Just realized that lol. So what are any of your suggestions if you suffer from anxiety along with other head stuff?

HostTracy

HostTracy

 

tidbits of my life

I am pretty much go with flow personality, & had never known some of the other good qualities about me which I was not sure of before,   & now learning about me every day & always think damn my husband is so lucky to be married to me 😄 maybe I should also tell him that. Anyways what's new with my life recently our kido had severe allergic reaction to soy protein powder he had which he had after his exercise. usally at home he takes whey protein, since he was at college & didn't have that, he decided to take his friends soy protein & he had bad allergic reaction, he calls us telling us to get benedryl  & he will be fine after he takes shower & med. after e came home, one look at him & I told him lets go to ER after you take benedryl. he had hives on his body & eyes were all swollen. luckily his throat was fine. So after few hours at ER & some miraculous med we came home. l am glad it wasn't worse off than what it was, & it became good teaching moment for all of us. I keep on telling him get your vitamins from food & not from this processed powder we don't have any control over it, finally it sunk in him that MOM is RIGHT. Anyway going to ER make me realize our son has become mature adult, he handled everything by himself, we were just concerned parents sitting on sidelines & feeling proud of our future doctor who will learn to become compassionate by being patient himself. What else is new in my life, recently we decided to convert out half bath to full bath, so that  our both floors can become livable & I don't have to go upstairs for any reason in case I end up having surgery for my torn miniscus.  I realized I really underestimate myself  in lot  of things. I  never enjoy designing process cause it is hard for me to imagine how things will look with particular design. but I do realize I do have good taste in things, & now that our bathroom remodeling is done.  I love it the way it turned out. So another lesson learnt, I am PERFECT   the way I am &  whoever people are in my life willingly are  lucky to have me in their life 😄   Asha    

HostAsha

HostAsha

 

I knew I smelled something

So when things started to look okay, working isn’t a fact I’m looking forward for but it is a must, and I was able to get back on track, the reality of my nose finally made sense. Let me explain: I often said I smelled ‘cigarette smoke’ every time my air conditioner turned on. I said smoke because I couldn’t make a comparison to anything else.  I bought cleaning supplies to clean my air conditioner unit with my father. I had to wait until a cool day and now is the time. We opened the closet door to my air conditioner air compressor thingy, we saw a large puddle of water on the floor. My water pan, for the moisture, was always overflowing.  There is a flap that is supposed to be on the unit where you insert the filters mine wasn’t there. For the past almost every years... I didn’t know so all the moisture from outside is coming directly to my unit.  So the smoke smell I was always smelling is in fact MOLD. I do have two air purifies and they work nonstop. So tomorrow I have someone coming out to give me an estimate for either cleaning or replacement. UGH... When it rains it pours. Just venting... It’s all good. It is what it is. I just came back from a stroke support group luncheon with three other groups (Caregivers, TBI, stroke survivors) I feel ok and tomorrow after I meet with the repair man I have a meeting for tax freezing, for those on disability. That means you pay a set so if it goes up I pay it but I get the difference back at the end of the year then to meditation in the afternoon to end my day. Namaste

ksmith

ksmith

 

Update on Life

Things are finally calming down after my brother's death. Still no full answers yet from autopsy but hopefully not too long now. Tomorrow his daughter gives birth to his 3rd grandchild (a boy). It may freshen some raw feelings but all in all it will be a really wonderful day. My dad is actually doing really great during his radiation and chemotherapy...no sickness or really bad side effects. He is just over half way through. I'm so glad he's doing well.   Me...I am finally calming a bit from when I wrote last time. I have seen all my Dr.s in the past month...Neurologist, Psychiatrist, and PCP. The lump on my neck is not seen on the ultrasound so my Dr. says that is good and not to worry. My Neurologist says I am doing well...She acknowledged the Cerebellar Cognitive Affective Syndrome and that Neurology would not treat it because there is not really a cure but my Psychiatrist and Psychologist would treat my side effects. My Psychiatrist had the privilege of seeing my anxiety attack for the first time in his office. Caused by a stroke of lightening and a very loud clap of thunder at the same time. It happened in a matter of seconds and he just was quiet and let me calm down before asking if I experienced this often. YES ALL THE TIME. He left the room and came back giving me a bottle of Nuedexta. He said when this works it works really well let me know in 2 weeks if you can tolerate it and if so then you will start taking these 2x a day. It will not help certain issues you are having but if it helps and is the right path then it will make a significant impact. The rest we will work on...but 1st this. It was a trial bottle of 13 pills. I am pretty sure I could feel a difference but then realized it is over 1000 per month. Crazy...undoable. So I contacted the manufacturer after about 7-8 days and found out they do have a patient assistance program. I am pretty sure I will receive the medication free. I have since finished my trial bottle and the Dr. office informed me that I had gotten the last sample but they are working on getting more. So for now I am not taking them. Still pretty bad emotional lability but calmer now...no more hallucinations, no panic attack in a few days. Just trying to stay calm.   Tonight my ex Narcissist boyfriend sent me a text message asking how I am. This is a common pattern for him. Not sure what he wants this time. I keep emotional distance...and just look and think forward.

HostTracy

HostTracy

 

Connecting to Others

So I want to make friends here again. I find people to play cards with to there are many personalities, many stages of dementia, mental illness. On the day a psychologist arrives, they wheel them in. I think to myself, this puts all ill folks together but a cna told me that different areas get the crazy ones because it would be too hard to care for 12 of them,so they spread it out. ok so that is why. But I went out of my room, shared my coloring stuff, cards,chinese food.And these folks were a toxic trio times three. One man buys pizzas for staff and select friends. pizza left me with upset stomach watching them argue, fuss, and leave one man out, whom I befriended...immediately that left me out.   I am glad I showed her kindness. I tried to be nice to all. Watching this man stir the pot left me ill. Then the women.....pitting one against the other,jealousies, petty stuff. Like high school. childishness. Are we not adults with a shared painful history.    I said I would go out and try again. After another day in common room under florescent lights,loud big screen, and over the top drama....woman in tears over some argument......left...   ....more drama....   I am back in my room. happy to be alone. I went out there but I found it exhausting rather than the fun days I played bingo and enjoyed it. Now I got drawn in. hurt. yet detached enough to walk away knowing that these are not people I will continue to visit or go out in common room. I would rather color or watch movies.   I told one lady, I do not even know the other lady so her snippy stuff is before I got here. The lady said does not matter,she is that way to all. I said of course. And I asked why she continued to hang out with people who frankly act like they hate her....she answered she was stilloo an inherent right. What kind of chaotic circle of hell was I visiting??   I took my toys and went home. After asking her if she needed any of the colored pencils she was borrowing. She said she had finished. We went our separate ways to bed.    Later that night I was asleep in the bathroom.....no one checked on me.  So the night shift cna was a girl who has taken care of me before. She  took good care of me and told me gossip that these new staff had not kept the patients cleaned up. I said well this man bought pizza for them and his select crowd. she said they failed to change patients so next shift worked harder. My deal is I fall asleep in the chair. I not ready to sleep at midnight. And no staff looks for me for pain meds...just   for glucose chek@    

SassyBetsy

SassyBetsy

 

Our next step - Hospice

Well, I finally made the decision to talk to hospice.  William has been declining.  He sleeps alot and eats very little.  He has alot of confusion and sees people that are not there.    The hospice agency was great.  They have suggested that I get a hospital bed and set it up in the living room.  I will be getting rid of the couch and recliner.   They provide all of his meds, bed liners, vinyl gloves, wipes, lots of things.   I will get a nurse once a week and CNA 3 times a week to bathe William.  A chaplain will visit him weekly, and they have volunteers that will come and sit with him if I have to go out.  They have respite care for the caregiver  (5 days each month).  I fortunately got all of our paperwork in order.  Medical power of attorney and medical directive for physicians.   Today, William has been up and cognizant most of the day.  He even ate a banana, applesauce and a little sausage patty.  Not much appetite but since he hasn't eaten for 2 days this is good. We shall see how things work out.  It has been ten years since his stroke and his decline has been slow but keeps progressing. Who knows what the next steps will be?  Quality of life needs to be an issue.  William has been housebound for over a year.  Hospice could be used for a long time.  They just renew after 6 months.  This could happen with stroke patients.  Ruth

ruthwilliam

ruthwilliam

 

Crazy Lady seeks advice

Ok - input appreciated- especially those who have followed me for years - literally !. Its taken a long time for me to settle down and into my "stroke widow" role. I was pretty young when it happened to Dan and I had ambitions of my own- all flushed when Dan stroked. So after the 4 years of caring for Dan ended with me in the mental institution and him in a nursing home - I am debating bringing him home. Why - Im doing virtually all his cares and still paying the bill for his care. Im finding, I may, in a few years down the line end up in financial issues if I continue to payout for his care, and even though I have a great boss I do not earn but barley a 1/3 of my previous - before stroke salary. With all the constant care and paying attention needed I could never commit to a job like I had previous . The job I have now accommodates , don't pay well, but is very accommodating. And I feel the actual want to care for him again in his our home. I feel most of the "RUN" has been taken out of me. Im not running as much , given up the alter life I tried to have.  Of course this will involve some planning and work , by no means is this gonna happen anytime soon. The home I have now is not handicap accessible , can not do long term care in it. So I would have to look at homes AGAIN --again history is repeating itself. So Im playing with the idea. Have not and will not tell Dan anything as I have not made a solid decision. I kinda feel like I don't want Dans story my story or OUR story to end in the nursing home YET. I recognise I may be repeating a pattern, but the pattern of everyday Nancy to the home to work to the home --- then to my house to sleep and repeat and paying a institution to do what I do isn't working either.... So for fun people digest this..... Yesterday the home had changed Dans bedding - YAH !!! so I notice the blanket on the  one side the visible is hanging really low , so I figured I would pull his bed out and even out the blanket. I pull out the bed and his blanket on that side has like 2 feet on the floor.... Im like WTF ?? so they took the rectangular blanket put it on the bed wrong ( side ways) and figured the extra would just go away... I laughed so hard.. Went and talked to his nurse supervisor and was like - I don't know who special ed is that made that bed , but man if you can't do the most basic simple and easy job in the whole place - I pity the residents.  I wasn't adversarial and not even angry - just the  daily shenanigans of the home is so frustrating. They are having so much trouble as are all the homes hiring that a "warm body" is pretty much the only qualification. I just don't know that the home is the best for Dan at this point. Im sure he'll end up in a home again, but I guess Im willing to try again... but the decision is not made and a lot would need to happen if thats the decision. Im not in a hurry --- and yes to my long time stroke net friends please chime in tell me what you think. You know my history, you know ME and you know the STROKE ISSUES we all deal with daily.---- Nancy

nancyl

nancyl

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