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Reply by Xenia

06 Jan 2014, 12:46 AM

Greetings to All:

Sunday afternoon, getting on with the day. Having mixed feelings as of yesterday.

Our gp came over after his day at the office, Saturday he does a clinic, spent about 1 1/2 hours here. Was very informative and helpful. We had a bad experience at our local hospital, meaning my husband was discharged from hospital on short notice, we had to arrange everything, no communication from the hospitalists, the hospital liason and head nurse. Had no clothes to bring him home, no hospital bed, no oxygen, good thing our family is helpful, daughter and husband were off work and came stat when I called. Brought his clothes, went out and purchased a bed similiar to a hospital bed from Sleep country, then we brought John home, He was discharged on the advice of an OT even though he had had a fall a couple of days prior to his discharge. Sleep country was excellent, they brought the bed the next day even though it was a Saturday, set it up, etc.

Since I was his advocate I got in touch by letter to the Patient Quality care program and you would have thought I was lighting fires under some one as I had more telephone calls, etc. Long story. Any how, when our GP went to the hospital to clarify all the happenings, guess what, the staff or head nurse and hospitalist in Acute care stated that I was a disruptive care giver, even though our family came in bathed John, changed his bed, brought in his meals as he could not feed himself and wanted soft diet. Even helped feed an elderly patient and helped another who only spoke German and a limited amount of English, translated as much as we could and helped her.

To this, our GP was incensed and stated that I was not that type of person and I was one of his best patient caregivers and that he also had the resperologist heart doctor speak on my behalf. I was stunned, also I just can;t take some of the kindness this doctor has shown me or anyone else.

I am not a self pitier but I wondered why it is hard for me to take kindness at this time, I feel mixed up and lost, almost like I can;t deal with this.

Anyone else feel this way?

Sorry if I dumped on you but I needed to get this off my chest as I am having a mixed up day feeling astounded that I was labeled as disruptive and having our dr. speak on my behalf. Guess I will get over it sooner or later.

Thanks for listening

Xenia

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Reply by NatR

06 Jan 2014, 1:12 AM

Hello Xenia

I had to respond.....first of all. You and your husband are blessed to have a dr who gives you 1. Home visits 2. Believes you 3. Advocates and backs you up! That's awesome.

the attitude of the hospital staff is appalling in my opinion. My experience in any hospital as a caregiver/family member...or in long term care... Is Grateful thanks to Any family member who comes in to help feed, give care, watch put for others and offer help/feeding to them......they are wrong to say what they did.

hats off to your doctor! I wish I could have listened in on that conversation where he backed you up. I bet you wished for that too! Be proud of your stand....be proud that you and your family gave your husband the best possible care...

as a caregiver in facilities ( now retired) and as a caregiver (also now retired, I am very aware of the importance of Reporting and demanding attention for my vulnerable charges. I also was disregarded at times, told I was over reacting, that the staff would check into things, but they didnt always respond to my requests on behalf of patients.

as an advocate sometimes you have to be pushy yet polite on behalf of your husband...sometimes you will have to do things for his well being that ordinarily you never would have done.

i can tell you are quiet, reserved, not the type to make a fuss or draw attention to yourself ( if I am wrong I apoloGize:).

so keep on doing just what you are doing! Don't even worry for a minute about how others see your efforts - if they don't like what you are doing for your husbands quality of life and good care, then that's a shame...it really is.

relax, take a deep breath and pat yourself on the back for shaking up a system that should not have to be shaken. It would be wonderful if every hospital and facility gave the kind of respect and care you gave...not only to your hubby but also another patient.

i am sorry for my long winded reply but I am thrilled to hear about your doctor...and about your advocacy., Bravo! :)

it it is hard to take kindness - as you said...you feel like someone else may deserve more time, more attention, but honestly you are so deserving:)
i hope tonight you will feel better about everything!

the way you and your husband were treated by the hospital was unjustified and very sad to hear....our loved ones deserve so much better.

rest well tonite and keep checking in.
I for one, admire you:)
best wishes NatR

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Reply by KathCull_admin

07 Jan 2014, 4:01 AM

Hi Xenia

What a weekend! How hard for you and your family. Words are so powerful. They can cause us to despair or feel overwhelmed by the kindness of others. Your family doctor sounds very special.

Funny isn’t it how kindness can be hard to take – almost like it takes away our defences.

I just read the poem that reminded me a bit of your weekend, posted by Cath1 on the thread In Honour of Care - A Poem Dedicated to Care Givers and Care Receivers. It starts off,

“I had a sad day and someone reached into my heart and soothed the pain

Through a loving gift offered without any thought of personal gain or glory

My story was heard as the person listened to me cry in words and rage.”

If you click on the link you can read the whole poem.

How is your husband today? How are you?

Take care

Katherine

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Reply by Xenia

07 Jan 2014, 5:29 AM

Hi Katherine:

I have a daughter and call her Katherine the Great, Russian Empress, she is not like the Empress but it gives us a laugh.

Thank you so much for the message and thanks to all who have responded so positively to me. The verse is so special and has heart.

To-day has been a mixed up day and we lived through it. Husband asleep now as it is evening and I have settled in for an hour or so before I go to bed.

First the Community Care Nurse called to tell me she was coming to-day instead of tomorrow as they were so busy. Wanted to come at 10:00 however the aide who bathes John is scheduled for that time, could she make it later 11:00, yes, hang up the phone rings it is the OT to tell I need to contact the case worker to change my schedule, also the special bed cover person would come on Wedneday or Thursday, no not Wednesday will come Thursday, hang up and the aide is sick and a relief has to come for 11:00 no, so she will come as soon as possible. The phone rings again and it is the man to deliver the bubble bed cover telling me that the OT will be coming as well, lets make it a party I say as my son in law was coming over to put in a new venetian blind I had received for Christmas.

All in all it worked out well, however, the poor nurse received a couple of personal calls and I noted she was tearful so I just let her talk and she told me that it was her dad and that her mother had just been diagnosed with cancer and that she was in the psych ward as she had had a nervous breakdown. My goodness, it was hard to see her in this situation as she had to go to the hospital and speak to her mother and father and staff. Here is a caregiver who has her own problems and is sitting in my living room while her mother is so ill. I handed her a box of tissues and after we did the basics of report I told her to leave and see her parents. We would see her next week, besides I had reported all the changes and John was in the shower and if there were any changes in him I just had to call and the nurses would respond.

Off she went and all the others came and went, my husband has a nice soft bed and that will help his pressure sore on his ankle (he does not move in his sleep_) and prevent any on his hip or shoulder. The venetian blind is up and looks great, my daughter and son in law cleaned up the kitchen and headed home and I sat back in my chair and took a few big breaths and thought, now this was one fine day! It is supposed to be Blue Monday but I never had time to think about that and was pleased to have accomplished so much in one day.

Oh my goodness, it looks like I have written a book, however, it is good to see what I have written, it makes more sense than mulling it around and not making sense of it all and all in all this is part of life, ups and downs.

Thanks again for the support.

Xenia

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Reply by marstin

08 Jan 2014, 2:47 AM

Hi Xenia,

Reading back on your last two posts, it sure sounds like you have been having lots of challenges. Talking about the hospital releasing your husband without warning really hit a sore spot with me. When Len was in hospital, they were trying to balance his medication before they let him go home. Within a few days (med's still not balanced) the weekend rolled around and when we picked him up on a day pass, they discharged him. I remember the flurry of craziness, trying to deal with his excitement and the fact that nothing was set up at home for him. Although they gave us the option of re-admitting him in a few days, there was no way he would go back. It was horrible and so darn wrong. He was so drugged up that he couldn't hardly function which was the opposite of what we had been promised. How fortunate that you have such a wonderful doctor and one who stands up for you. We ended up with one from the hospital who was so cold and clinical that she forgot she was dealing with human beings.

Wow, that nurse in accute care should be ashamed of herself. I truly believe that there are those who are truly meant to be in health care and others who should be doing behind the scenes work so that they don't cause more pain to patients and family. I have seen the ugly side far too many times.

You seem to be such a kind lady and are fortunate to be blessed with a wonderful doctor. Probably because you have such strength, it feels foreign to you to accept kindness from others. It's okay sometime's to just let go though.

Your latest entry sounds like you had quite the busy day and yet you still retain your sense of humor. How wonderful is that! Keep writing those long messages, they are a perfect way to let the emotions out after a stressful day.

Hugs,
Tracie

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Reply by Xenia

14 Jan 2014, 5:28 PM

Good Morning to All:

All the help from you has been a great asset in my daily living as I feel I can share and not seem to be complaining or asking for sympathy. I do believe what we have is empathy for each other as we have had mixed feelings about caregiving, passing of spouses, waiting and not knowing what to expect.

I find that I am losing some of my, whatever one may call it, ability to do things in a timely manner as I used to. Also, I have been cooking and baking for years and yet I find myself looking at a simple recipe such as muffins and I am at a loss. Doing housework, what I used to do in 15 minutes is now taking me hours, I need to take time outs more often and check whatever I am doing and I seem to run from one chore to the other and not completing the first. Has anyone else been in this dilema?

I go to see my physician to-morrow, daughters chasing me to go, they are concerned as my blood pressure has gone up, rapid heart beat, and they want to make sure I am okay. I have given up going to the pool where I used to spend an hour walking and exercising and now it is hard to get out as husband needs a caregiver and can't be left alone. I am going to try and arrange for more respite care but I am always in fear of asking for too much. I get 4 hours a week and sometimes when I am out I want to run home then other days it goes so fast.

To-day the nurse comes and John gets his hair cut, saw something about a son having his mother's hair cut and how helpful it was. I could have cried as he was so caring. We, family, try to make everything around home as it used to be and hopefully this helps.

To-morrow, we will be celebrating our 58th wedding anniversary. Took out the cake top we had on our wedding cake. Will put it on an angel cake as this is husband's favourite. We sure were brave to have a wedding in January on the prairies, snow and more snow but all went well. Now we live in B.C. and enjoy our life here.

To all I send my best to all and wishes for comfort in all your needs and thanks for listening and sharing.

Xenia

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Reply by NatR

14 Jan 2014, 5:50 PM

Hi Xenia,

i am in the middle of a couple of things right now but just Had to respond to your comment about your coping skills - how things are more time consuming more challengIng - I totally totally get that!!!

i used to be like you - juggle kids job laundry meals shopping etc etc and now it's a big deal to make a cup of coffee and toast some days!

by all means see your doctor but at the risk of being hauled away in a paddy wagon ( and I am only 64) I must admit feeling lost unfocused etc at times - some of us call it "brainfog!"

So more later but I wanted you to know I think you are truly marvellous and a wonderful spouse and caregiver, mom and grandma

sending a hug from me to you!!!
natR

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Reply by marstin

15 Jan 2014, 12:09 AM

Hi Xenia,

This all sounds very familiar to me. When Len got sick, I would find myself with occasional bursts of energy to do things but more times than not, I lost all interest in anything. I rarely cooked, cleaned only because the nurses were coming in but most things I just let slide. I don't think we realize how stress affects us and although in many ways we think we are doing fine, we really aren't. The foggy brain is one of the things that is quite apparent, just not to us most times. I must admit that even now I tend to have trouble focusing on anything other than the important things. I explain it to my daughter's as my brain is just too full right now. I think we go into overload and the mind can only absorb so much. Taking breaks is a necessary thing to be able to cope with all that is going on. You are such a devoted wife.

I can remember when my mom was in the hospital and my niece would go in and wash her hair as best she could then set it and wait for it to dry so that she could comb it out and pretty my mom up. It meant the world to her. The male nurse that we had for Len was such an incredible person and Len would light up when he came to check on him. This nurse and I became such good friends and he always went above and beyond. How fortunate to find such kind and caring people in the health profession.

Happy Anniversary to the two of you! How wonderful to have had that many years together.

Hugs,
Tracie

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Reply by Xenia

15 Jan 2014, 5:37 PM

Hello All: Tracie,NatR and all:

Off to the dr this a.m. had to do some juggling as my caregiver is ill, supposed to be here at 10:00 so I had to juggle and get a person at 10"30, daughter is coming over and watch Dad while I head to my drs' appointment at 10:30 then pick me up after the caregiver comes. One more chore.

Last nite the dr. called and told my husbands sugar readings are too high. In hospital they were not too worried about it, never go past 11, mornings are 5,6 and highest 7, now I need to give him his insulin in the a.m. and see what happens. Here I go again, feeling guility that maybe I was not watching his diet, etc. Does it really matter? Hospital didn;t seem to care, howevever, our dr. is very caring so I follow his advice. Let's hope this is helpful. He is on Lantus and when he was on 30/70 it was twice a day Lantus once a day at the same time.

Thank you for the advice and caring words the other day about losing your concentration. Yes, I heard about Brain Fog, have that often when I am in pain, have some muscle problems and some days brain fog cuts in.

All for now will be in touch later. Off into the grey weather, supposed to be sunny today, hopefully better than the past few days when we had a deluge

Xenia

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Reply by NatR

15 Jan 2014, 8:28 PM

Hello Xenia,

you ou made me smile, not because your note was funny, but it was so down to earth. You are a caregiver and a caregiver performs a juggling act almost daily,:). Glad you got things sorted out.

as Tracie commented yesterday, being a caregiver overloads the circuits....not just aging as I was commenting on....but yes, between aging and caregiving....we all do pretty miraculous stuff regularly. No one really thinks about all the things, tiny details that get dealt with every day....

you seem to be doing such an excellent job for your beloved husband. I neglected to say Happy Anniversary as well yesterday.

You were talking about your husbands blood sugar. The numbers going up and fine, the concerns about what to do, when to do it, diet - all important things, but I get what you said....I get that you are doing your best for your husband. I do not have experience with his sugar condition, and am only commenting as another caregiver ..but I only want to say, dont beat yourself up over the numbers, the fact that sometimes no matter what you do, it seems like the readings change - regardless.

you are heads and shoulders taller than any other caregiver for your husband. Don't question that.

You are doing a hands on, loving gift for him. The bonus is that you have a wonderful doctor as well, someone who advocates for you and your husband. So relax, feel the confidence in yourself....and know you are the very best person to do this job.

i am sending you sunshine and best wishes from a cold northern Ontario day.
Take care of You too, and I am so happy to hear that sharing on the forum is helpful to you. It's exactly why the forum works so well - real people, real patients, real survivors, and support:)
hugs
NatR

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