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Reply by Xenia

16 Jan 2014, 2:27 PM

Good Morning:

Thank you for the sunshine NatR, we had a bit of it here in B.C. where I live and of course we had the odd bit of rain, but it wouldn;t be the Wet Coast without it. My husband is from Ontario and I am origianlly from Saskatchewan. Therefore, we settled in B.C. as when he left Ontario, Windsor, he choose B.C. for his home.

Had an uneventful day yesterday, caregiver is wonderful. Her husband passed and she is so understanding and caring. The 4 hours out is good for the soul. Dr. has me going for blood tests so will do so this morning. Woke up at 5:00 a.m. wondering if I had fasted the required 10 hours, yes, I did, once again the doubts but I am not as anxious as I have been. I wonder if it is acceptance that I can only do so much.

I started to take care of myself, when John had his hair cut the other day, I asked the hairdresser if she could do mine. Yes, and I sure feel better. It is hard to get out for a haircut on the 4 hour respite as I have many other items on the agenda. She did a great job and with naturally curly hair what can go wrong, other than cutting it too short and it gets real curly. Feel much better having that done. Seems a lot of these things get put on the back burner now that caring for husband has been the number one item.

I find I wander around the house, actually condo, looking for things to do and then not doing them. It is like I have to push to do them, I get the floor vacuumed, but I find I am not doing the extras like making sure the laundry is put away neatly, I am just shoving them in their place, then a few days later I am shocked at the condition then straighten them out. It is not that important, so one day at a time and who really sees it when the doors are closed.

Looking forward to Saturday, the family is coming over to help us celebrate our 58th, I did make the angel cake, wedding cake for us for dinner last night. Put the cake top on, bride and groom , husband had a good laugh and enjoyed his cake. Had to give the neighbor half of it as it is too much for us. Family working so they didn;t have time to come yesterday that is why Saturday is the big day.

Looks like I have written a book again, since I found you I have been able to put things down on paper that I keep inside so if I digress and go all over the place forgive me but I feel comfortable just chatting with you all as you are like friends I have known for a long time.

It is 6:30 now so off I go, get things ready for the day and read a bit before I get husband settled in and head off for an hour. Take care and thanks again.

Xenia

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Reply by marstin

16 Jan 2014, 4:21 PM

Hi Xenia,

How easily we forget to take care of ourselves when we are caring for someone else. I'm sure your new haircut makes you feel so much better.

How wonderful that you made your angel food wedding cake and brought a big smile to your husbands face. It's moments like that that will stay with you for many years to come. I think at times like this, we tend to slow down a bit and savor every precious moment that comes along. I can remember my husband staring off into space, I thought, and when I asked what he was thinking about he gave me a huge smile and whispered 'Hockey!'. He was actually watching sports on TV and something was on about the Canucks. It always makes me smile when I think about it.

Where in BC do you live Xenia? I'm in Burnaby and just waiting for the haze to disappear and the sun to come out. Sunshine always seems to make everything seem just a little bit better.

Hope you have a great day!

Hugs,
Tracie

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Reply by NatR

16 Jan 2014, 11:44 PM

Hello Xenia, Tracie,

it feels good to be considered, even for something like a haircut huh? Glad to hear that you are giving yourself just a little bit of attention...it makes all the difference.

mentioning the cake....that reminded me it's one if my faborite desserts...and I have a great recipe for 7 minute fluffy frosting:). It's like marshmallow heaven:) do you have a favorite topping too?

its great to know there is a circle of support to write to and hear back from:). Glad that you are finding it a helpful experience.

i also have found connecting with others, caregivers, family members who understand how it feels...makes a bug difference. That way you are never really alone, you can always send out a note....we may not all get the same people responding, but generally the response is the one we need;)

wishing you all a good evening....it's a blustery winter night with sparkling snowflakes falling...and under the street lights they look like a field of diamonds. I remember thinking that as a kid....wishing I could pick each one up, take it home and enjoy the reflected light.

that is what this forum reminds me of, a host of people from all over, comnecting with one here, another there....all with a different spin, a comment or caring remark, or even just "I hear you!" It makes such a difference:)....hope that it works that way for each of you too!

Good evening....and a good start to your tomorrow:)
night,
NatR

ps ps I have to give a High Five to the guys who participate here....you all rock, eKim, Mark, Brayden...who did I miss?

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Reply by Xenia

18 Jan 2014, 9:11 PM

Hi Everyone:

Just had to sit down and write, I am frustrated and angry. Why, who knows little things, to-day husband had his walk with his walker to his bed and ran over my foot, when I jumped he ignored me and then stated you did it. Oh well, I guess he didn't realize then on Thursday when I was going to the clinic for my blood tests he spilled milk all over the table, trying to be helpful and putting his milk into his coffee, milk all over the table, floor, himself, etc and looked bewildered,

I was angry as I was in a hurry to get to my tests, then rebuked him and then stood back and thought, what the hey, this is his home and house too, it's only a carpet...of course that set me back for the morning and got over it.

As I write this I feel my anger going away, feel less tense, etc. Guess this happened because our kids are coming over and daughter called on her cell that they were on their way, she forgot her favourite baking pot for the roast she was bringing, also my husband wanted to know what and who I was talking to then ran over my foot. It sounds crazy but lately every time a phone call comes in he wants to know who it is and if I make a call he wants to know to whom I am speaking. He doesn't use the phone as he is wearing two hearing aides and even with those he cannot hear very well, he is almost blind , has macular generation as well as one dead eye on top of his palliative care illness so I assume he is also frustrated.

If I sound like a whiner, yes, to-day I am and was just watching, earlier a video about caregivers and how we internalizer our feelings....guess that was me. So forgive me if I sound too angry, too self pity but just putting this on the screen I feel better.

Thanks again for listening.

Xenia

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Reply by NatR

18 Jan 2014, 9:39 PM

Hi Xenia,

I am sorry to hear about the stress you are under, but glad to know that sharing your story eases the frustration.

i can just imagine the scenarios you were explaining....yes, it's truly hard to always be the one fixing the spills, explaining who is on the phone, and being in the way and getting run over...by your husbands walker.

by writing it and sharing it, we all get to understand your particular challenges today. From the outside looking in, it's easy to say, it's not a mountain...but from your point of view it becomes a big deal - whether it's daily, hourly, or whatever....I hear you loud and clear. Caregiving is not easy but it's something we all get to experience in life sooner or later.

as you said, your husband lives there too, so it's his right to be there...and I know how deep a breath you have to take to let things go, to be silent, to just gloss over it.

but seriously how are your toes? :). I hope they are okay....its easy to bruise when we are older.

you know, I was just thinking about your wedding anniversary the other day, what an amazing length of time you have been married, and yet you still give everything to your husband. You are remarkable! He is so lucky to have your caregiving skills.

I know now that this evening will be better because your daughter is coming over to cook supper. Hope she find a pot that will work best. Relax, put your feet up and let your daughter do something nice for you...enjoy the extra conversation in the house and try and relax just a bit.

its definitely ok to whine....I do it too! We all do it at times. Even me:)
glad to know the Forum gives you a place to vent, share and get support.
Sending you a hug...
NatR :)

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Reply by Xenia

18 Jan 2014, 11:33 PM

Hi Nat R and all on this forum and all forums:

My daughter did bring me some good news, helped chase away my anger.

On W5 TV this morning there was a program called : The Final Days of Larry Librach, the Champion of palliative care.

It was wonderful...You can go to Goggle and Put it in and the program comes up. Wonderful man and to think he himself was going through what our others, husbands, parents, children went or are going through, facing death.

I watched it twice as I could feel the warmth of this man and his caring for patients even at the end of his life.

Take care and I am feeling better. Watching a Crane that sits on the roofs of the Condo complex and down to the Koi Pond, not frozen and the fountains are working. No fish but he does his walk.

Xenia

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Reply by Xenia

24 Jan 2014, 6:19 PM

Hello Everyone:

Here it is a beautiful day, the sun has shone through the fog and I am feeling lonely.

I had my respite care on Wednesday and it was uneventful. Went to Walmart and did a bit of shopping, then to a few other shops. Time seemed to drag and I came home an hour early as I didn;t really have a place to go and spend time.

Do you get lonely? I wished I could get out today and just walk but I have to be home as there is no respite care to-day. I will have to look into arranging for another day respite as I feel hemmed in some days and then other days time flies by.

Husband is still the same. Not asking for much and sleeping quite a bit so the day seems long.

Daughter coming over after work and I will be making her a salad which she asked for. Other memebers of the family have been here this week already so I wont be seeing them until next week.

Just thought I would drop in and say Hello.

Take care

Xenia

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Reply by NatR

24 Jan 2014, 7:40 PM

Hi Xenia, I apologize for making you wait for a note from me...in the middle of a move, so I find my days are a bit distracted and full of details to do, to pack, to think, it's hard on my older brain ;)

i enjoyed your description of the crane that you could vJew, and how he spends his day.....iy helps to watch nature..bet mr. Crane Is hoping for spring too!

yes days and nights can be lonely, especially with this cold winter weather...it's been non-stop since December! Today it is warmer, but it's snowing and blowing....not much better, but we have to take what we get...and soon we know soring will arrive:)

Yes if you can get another day of respite, that sounds perfect...your days must be long - it's worse when you are waiting for your husband to wake up from his sleeps. Are you able to have short conversations at all? It is challenging to be there around the clock, so plan more time out fir you if you can.

its nice that your daughter is coming over for supper, nice;)
do you have any friends nearby who can have lunch with you? Some company and a change of scenery does you a world of good.

i know how much it helps to have lunch or coffee with a friend and talk about different things.

i am glad your sun has come out to shine on you....there is little chance of seeing ours today!
wishing you a good afternoon....
natR :)

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Reply by marstin

24 Jan 2014, 7:51 PM

Hi Xenia,

Yes, an absolutely beautiful day here in BC. It makes you hope that spring is just around the corner.

Loneliness can be a difficult thing to deal with. So often when Len was sick, I would wish for those times when we would sit and discuss the day and life and everything else in between. When your other half is no longer able to engage in the day to day conversations it can become almost unbearable and you feel like you are living alone. You are isolated because you are tied to the house and have no option but to be there. My world was small to begin with as I had been a stay at home mom for 18 years and didn't have any close friends that lived nearby. Although my daughters still live at home their lives are filled with college, work and their social lives. Before Len passed I could go to my mom's for a break which helped alot. I think it was when both him and my mom had passed that the loneliness really kicked in. I made sure I went out every day and wandered the grocery stores and to my local Tim Horton's. In time you learn to deal with the loneliness but it is never an easy thing. My social life even now consists of talking to the people who know me at the grocery stores and my visits to Tim Hortons where I will chat with people working there that I have come to know. It's not alot but it is at least some form of interaction.

When my dad became ill and untimately passed away, I made sure that I spent some time each day with my mom. I think the evenings were the toughest for her because you can only chat on the phone so much, or clean or watch tv. Cooking for one also has no appeal.

Do you have any friends that live near you? Any interests outside of the home? Somewhere you could go so that you have other people around to talk to when you do get a few hours to yourself?

All of this is such a huge adjustment in your life and bound to make you feel lonely. We're here any time you need to talk.

Hugs,
Tracie

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Reply by KathCull_admin

01 Feb 2014, 2:07 AM

Hi Xenia,
I liked your B word 'Blessing' at What are your 3 words to describe our community.

How has your week been? Was someone able to come and stay with your husband this week so you could go out?

Thinking about you.
Katherine

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