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Reply by moderator | modératrice

17 Feb 2014, 10:00 PM

Hi Frustrated,

How are you doing today? This weekend is a long weekend, at least in Ontario. We call it Family Day weekend and we did just that, spending it with my daughter and my mother. While it was still cold, the sun was shining and we went for a walk in the woods a couple of times.

Were you able to get outside and/or see your grandkids this weekend?

Colleen

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Reply by frustrated

18 Feb 2014, 12:18 AM

It was raining and very windy here, so I didn't get out for a walk. My daughter and her husband who live out of town come for a surpise visit, We had a nice visit with them.

I also am looking into doing volunteer work for the local Zoo. It isn't very large,but I enjoy it as do the grandkids.

Once I get my husband up and dressed and feed, he is good for a few hours. He usually just sits and watches TV. I have a lift chair for him so he can get up and down as needed. I always carry a cell phone as he does, so he can call me and I would only be 15min away. He also calls me onhis cell from a different part of the house if he needs me, so it works.

I try not to feel guilty about going out, If I stay at home all the time, I get really depressed. SO for my mental health, I try to get out and do something productive. I can only clean and cook and read so much. He accepts my need to get out. I try not to leave him for too long. If I am longer than a couple of hours I check in by phone.

I really apreciate everyones supporting words. It helps to know that there are others who know what you are going through.

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Reply by marstin

18 Feb 2014, 12:51 AM

How nice to have a surprise visit from your daughter and her husband. It's great to have support around you.

The one thing you learn on this journey is the need for self care. Without that you would probably become very burnt out and emotionally exhausted. You are doing a great job of covering the bases and taking care of him so that you are able to step away for a little while and do something to take your mind off of what is happening in your life.

I was fortunate to have Len's friend come over nearly every day for a few hours so that I could get away and think of something other than what was going on at home. Not that it was ever far from my mind but I was able to interact with other people and talk about things that weren't health related. Soemtime's it was just a trip to my local Tim Horton's where I could laugh and joke with the people working there. A mini mental vacation. We all need that to be able to deal with all of the changes in our lives. This a way to survive it and come out at the end with our minds intact.

I hope that the sun soon shines where you are and that you can get out and breath some of that fresh air.

Hugs,
Tracie

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Reply by frustrated

18 Feb 2014, 4:18 AM

Thanks for your reply Tracie. But you know as much as I try and as much as I sound like I have it together, sometimes I feel like I am just fooling myself. There is always always this unrelenting sadness and deep deep hurt and the worst part is I know it will only get worse before it gets better.

I try to convince myself that I am strong and I can get through this and that I am doing it all right.

But yes, I do feel like I am fooling myslef and like tonight it would be nice to have a shoulder to cry on, but instead I will just let a few tears fall and suck it up and help him get ready for bed. I do sound pathetic tonight don't I

Sorry, but I know you will understand.

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Reply by marstin

18 Feb 2014, 6:17 AM

Hi Frustrated,

Please don't ever apologize for how you are feeling. This is such a difficult time for you and I understand how you want to be strong but you are hurting so much. You are doing all that is humanly possible. Caregiving is a tough role that you were never trained to do and when it is someone you love, it makes it so much more painful. We do our best and hope that with all of our hearts that we are doing the right things. We are so powerless in all of this and I think that is the toughest part. Let those tears fall, they will release some of the stress.

Some days are so much tougher than others and as time goes on it will be even more important for you to take some stress breaks even if it's just to take a few minutes outside to clear your mind. Be gentle with yourself, you are hurting. We tend to focus so much on the person that is ill that we forget to look after ourselves and often end up sick because of it.

I send you virtual hugs tonight and warm caring thoughts.

Tracie

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Reply by Aphasia Sufferer's daughter

18 Feb 2014, 6:38 PM

hi Frustrated

Maybe your husband could put his hand on your face or your hair? Or you could put it there for him?

Also, do you ever cry with your husband? While I'm sure it seems like a bad idea most of the time, there is no reason why you both can't cry for yourselves - "Poor us" is an okay thing to say and cry about.

I say this because this dying is a dying that you are both experiencing as a couple. This past summer, my father and mother were talking about having lost all of their brothers and sisters and friends. My dad told me (with my mom there) that after talking about it for a while, they decided that , if you have to die, you might was well be the last. My mom and dad an ironic sense of humour and when my dad siad this, they both laughed a little. It allowed me to give them hugs and to know that they were talking about their mutual losses.

When your daughter and her husband come to visit, do you ever go out with your daughter for a while and have your son in law stay with your husband for company? or the other way around- you go out with your son in law? even for a little while?

I have a flower that I grow inside in the winter. I started doing this when I was in university and had to study for exams for weeks - and couldn't bear to sit still for such a long time. I buy an amaryliis bulb and grow it indoors - they shoot up a couple of inches A DAY once they get started - they're usually two or three feet high when they finish and some have two or three very large flowers. I grew one in my dad's apartment and in my mom's seniors residence room for the month beofre Christmas - they grow so much every day that they beome a sort of happy event on all on their own. My parents would water them - my dad would water them and my mom would watch. They would report to me about them when we were on the phone. If you gave one to your daughter and had one at home, you could grow them at the same time. YOur grandkids could use their cellphones to take a pic of theirs as it is growing and then text the pic to your husband. Little things. We don't use the technology we have enough.

AlsoDo you have pets? Did your husband ever have pets? , At one point when I was angry alot (divorce) and home with my kids, I bought a fighting fish from the pet store. I called him Mercury. They live in a very small fishbowl and fit the windowsill - A small investment. Every time they see somethihg, they fan out their gills and are very beautfiful. Again, it was a daily happy distraction - something beautiful and small living near the sink where I was washing dishes and cooking meals. Low cost. Low maintenance.

Grief is overwhelming. For the past three weeks, I have't been able to think through the simples t hings. I have four ski tickets. I thought I'd go skiing, but I couldn't get my jacket, my ski pants and my skiboots together. I couldn't find the pants. Actually, they were hanging on a hanger right beside my ski jacket in plain view. I had to idea and the desire to go, but my brain just couldn't do it.

Over Christmas when my parents and my kids were here, my kitchen utensils just weren't getting clean in the dishwasher. I couldnt figure out why .So I washed them by hand. Still they weren't clean. Then this past weekend, I suddenly thgouth - heavens there is probably no salt in the water conditioner. But I couldn't make myself go down tothe basement toc check. So I did need food - and bought the salt when I was shopping without checking the basement first. When I got home, and was carrying in groceries anyway, I wnet down to the basement and TADAHH - there was no salt in the water softener - so I putin the salt and bingo - my stainless steel utensils are all clean.

I am shocked at how debilitating grief has been. I couldn't look like I had it all together if I tried. My dad took care of my mother for 8 years - then this past summer it becasme to much for him. He couldn't do it all and he couldn't manage the caregivers when we got caregivers. He felt that the caregivers added too much stress for him and for my mom - too many of them - had to be told over and over what to do and had to be motivated - he didn't have the energy anymore to direct the caregivers --- he got pneumonia and we had to move my mom out to a residence. He went almost every day. He really had a hard time with it but he just couldn't do it anymore. It's hard to accept our limits when we love/d the person. He knew that my mom wouldn't be happy. But he just didn't have a choice.

I guess What I'm saying is that this process of caring for the dying is a process of coming to terms with out own limitations as a couple and as individuals and as families. There's a certain loss of illusions and effectiveness. The illness just takes away all of our abilty to get things done, to make things better.... I, as you can tell by my posts, am a very chatty person. very very chatty. When my mother died, I had no words left. I had no words to pray, nothing. I was silenced. A week or so before she died, I was visiting durin gone of my two or three day 24/7 marathons (sleeping on the floor of her room etc.) - She was sitting up on her bed and looked at me and said "Talk." (She had aphasia, so words weren't plentiful. For the first time in my life, I couldn't think of anything to say. No words came. We were comforable there saying nothing and eventually something came to mind, but really, I had no words. This experience I think is likely shared by a lot of caregivers - It was a forewhadowing of things to come.

hugs,

Cathy

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Reply by moderator | modératrice

10 Apr 2014, 1:10 AM

Hi Frustrated,

I just wanted to write a quick note to let you know that I was thinking about you. How are you doing?
Colleen

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Reply by frustrated

10 Apr 2014, 3:25 AM

Thank you for thinking of me. It is so hard to watch your once vibrant intelligent partner become a dependant invalid. I thought it was hard watching my mother deteriorate, but it is much hard to watch yhour spouce become almost totatly dependent. I know it is humiliating for him to have me help him with basic personal hygeine. But yet it is necessary if he is to stay at home.

That will be a hard decission to make, when will I no longer be able to give him the care he needs. He is a large man and when his mind disconnects, he is unable tohelp me help him. I have our son come in when I can't move him in the wheelchair. He uses a walker most of the time now.

It just makes me so sad.

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Reply by moderator | modératrice

10 Apr 2014, 12:27 PM

Choosing between home and hospice is a decision several members of our community have had to face and are facing right now. In fact, you may wish to connect with a member who just joined our community. Her nickname is grammakim04. She started the thread:

I'm so exhausted.

But is also sharing with Xenia, Dale and Mark99 about "companioning" and hospice care on this thread:

When to start the conversation about 'end of life' wishes/planning

Perhaps you would like to welcome grammakim04 and let her know she's not travelling this path alone.

Colleen

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Reply by KathCull_admin

29 Mar 2016, 5:02 PM

Dear Frustrated,
Just wanted to let you know I am thinking about you. I know it's been over a year since this thread was active but that does not mean those community members are forgotten.

Take care
Katherine

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