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Reply by Nouce

21 Jun 2015, 10:09 PM

It makes me sad to read all your notes, but reminds me I am not the only one. I am facing the reality that I can't take care of Pablo as I have been doing for years. I can't move him on my own anymore--certainly not 10 times a day. Costs of caregiving at home are soon going to equal self pay in a care center, if he can get in. I am going away for a week. Will the care plan hang together? How will I be able to send him away, if the space opens up? He was supposed to die along time ago, and now he is so unhappy because he can't do anything. It's like someone is cutting off his self, a centimeter at a time. No matter what I do ,it's not going to get better. OK. Maybe I'll feel better jus having said this stuff.

Nouce

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Reply by Razz

28 Jun 2015, 2:19 PM

(((Nounce)))

I'm glad that you feel better for just saying "this stuff". Our thoughts never seem to stop churning. At times it feels as if it's all consuming and "life" outside of our situations seem to be passing us by. And I too can identify with watching as someone is being "chipped away" slowly but steadily and there is nothing we can do. And yes ... it is not going to get any better or any easier.

It became very clear to me this past week that my mother can no longer take care of herself. I also know that I cannot possibly do that myself and so she will be referred to a care center. At least for me I've been able to come to terms with that thought. Unfortunately even with that referral it could take months and months for a bed to open up. I wonder if she'll even live long enough for that to happen. She has had a couple of good days now that Home Care has upped her hours of care which certainly helps. But it doesn't change the bottom line. Our family doctor strongly suggested that we take her to Emergency and then refuse to take her home as we can no longer provide her with the care she needs. It is a way to force the "system's hand" and get a placement sooner. However she could also end up sitting in an acute care bed for weeks just the same. Do I leave her where she is for now, where is it familiar and she's content? I don't know and I keep going back and forth.

My oldest daught came from BC for a quck visit to see her and Mom was so happy to see her. Two of my brother's daughters are coming next Thurs. They too want to see her now while they can and they also live a great distance away.

But I still cry at night. This has been such a difficult process and at times seems to be going on "forever". She has stated that she is ready to go and we are ready to let her go. I guess all the "ducks" are not in a row yet.

Razz

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Reply by Nouce

28 Jun 2015, 7:00 PM

Oh, Razz! I know what you mean.

I finally went away for a long weekend (worked really hard to get a good coverage plan) and then got a phone call this morning that Pablo had fallen trying to move himself. Thankfully he was only scraped, but now I feel like a shit becauuse my plan wasn't good enough.

Also waiting for a bed. Like waiting for Godot..

Nouce

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Reply by Razz

28 Jun 2015, 7:19 PM

NO Nuance ... your plan WAS GOOD ENOUGH! There are just so many variables that you can't plan for. You are not a mind reader nor a fortune teller.... how could you possibly know what someone else "might" decide to do. Would it have been any different if you had been home?

What if, instead of this happening to you it was happening to your best friend..... what would tell her? Those are the things you need to tell yourself. Don't beat yourself up. You didn't fail. You so deserve the time off and in the end no real damage was done. You're a wonderful caring and compassionate woman who is doing the best she can .......who could really ever ask for more?

Razz

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Reply by NatR

28 Jun 2015, 8:52 PM

I agree with Razz....we all want to beat ourselves up for not being there...but we just cant always be there...and caregivers...NEED to recharge the batteries....
Its an awful feeling when you cannot reach out your arms wide enough to hold up everyone you love...but that is impossible.
We all have to sleep too!
Hugs..NatR

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Reply by Razz

10 Jul 2015, 10:07 PM

Well it's raining!!! Those clouds just got heavier and heavier and I knew that something had to give.

Having Home Care come in worked well for a couple of days then it seemed like the situation went all to "heck in a handbasket". I just say that she was falling through too many cracks and if I didn't go in everyday she wouldn't have been cleaned up properly and her environment was not healthy as she was having trouble "toileting" herself. In other words her bathroom was often a mess that needed to be cleaned up by yours truly. The Aides are not allowed to do that kind of work (nor do they have the time) and the housekeeping dept. of the facility is sure not expected to touch that with a 10 ft. pole!

And the skys opened up and the rain came down ........

Last Friday I once again took her to the hospital but this time I was lucky to get doctors who could understand that Mom needed far more than what she was getting. The admitted her that night (hey we were only in ER for 13 hrs!) and they found a bed for her the next day.

She doesn't seem aware of the fact that she's in hospital. When asked if she knows where she is she either answers "nope" or try to think of the name of her building. The other day while having a "mini mental" done as part or the assesment process she answered that question with "I think it must be a school - everyone asks enough questions, they must have a lot to learn" - LOL.

She only once asked me "why are we here" to which I replied that she knew she was having some troubles and I wanted to get it all checked out. That was the only time she seemed to make the medical connection. She has never asked me directly where she is. She has never asked me since why she's where she is. She has never asked about when she can go home. I really think that on some level she knows.

Clear sky are on their way..... although Mom's condition hasn't really changed. It's that on somme days I look at her and think "she's never going to get out of here". She's lost more weight to a measly 68.4 lbs. She sleeps alot, which one would expect and now she's not only declining most of the food offered but she's not drinking much fluids either.

They managed to do a complete assesment on her needs this week and according to the Hospital Social Worker she will be placed on the "list" later today or tomorrow. Then we wait for the phone call that tells us they have a space for her in a Long Term Care facility. This can be a long wait or a short wait .... not sure what determines who gets a bed and who can wait a bit longer. They will try to place her in one of 3 choices we picked that are close to us and where she is right now but there are no promises. However once you're in the "system" so to speak we can ask for a transfer and apparently transfers get bumped to the top of the "list".

I long for the sun to shine......

Razz

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Reply by NatR

11 Jul 2015, 1:58 AM

Dear Razz,

It is really hard to stand by, watch, help, worry, and then wonder what happens next.
I heard a story on CBC radio the other morning about a mom with a special needs 21 yr old - who was falling through the cracks in a long term care facility - and how the mom still needing a break from caregiving still has to worry about her daughter eating enough, spending too much time alone during the day, not getting enough personal care in timely fashion. It seems like families just always have to worry and stand by.

It sounds to me like you finally have your mom in the system as you said - and now you have to let it run its course.

You are right about homecare isnt enough - there still needs to be someone on call to check in, check up...and do the worrying and picking up. I have a friend who is doing that for her dad..her and her two sisters all work full time and are exhausted by the steady visits, meals, and supervision. He refuses home care. One day things will change for them. But for now they have no choice - as it is his right to decide

I hope that you will be able to get some rest for yourself. I know you need to take care of you so you can keep on being the advocate.

You need a bit of rest - and some sunshine. Hope you get both.
sending you good thoughts,\
NatR

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Reply by Razz

11 Jul 2015, 9:13 PM

"It seems like families just always have to worry and stand by."

The initial relief I felt when Mom was finally admitted to hospital it still there as there is no question that she needed to be someplace much safer than where she was. However as you say NatR that relief is now over shadowed by concern and more worry. What I'm grateful for is the fact that Mom doesn't seem to notice much other than when she's cold (which is pretty much all the time). I am so grateful for this as her life has come down to such a "small" one and she seems comfortable even though some of her needs are not getting met.

Her psoriasis has really flared up in the past couple of days. Even though the hospital had a list of her medications (including the cream for this) nothing was "ordered" and so she hasn't been getting anything for it. Her first few days in hospital you wouldn't have noticed that she had it as things had really cleared up (for some reason) so I could see why no one was concerned. Now it's obvious and yesterday I spoke with her nurse asking about any "orders" for cream and if there weren't could she please make note of it for the doctor. Yeah... we all know what happened. Fortunately I did stop and pick up her jar from home ... now I just have to hope that they will actually USE it.

There is also now concern about "pressure" sores and they are working to prevent them from developing but she now has one on her back bone. Sigh. All part of not being mobile and I know that there is not enough staff to cover everything. I don't blame the nurses, they are run off their feet trying to keep up with everything and some things just tend to get missed amongst it.

I see her everyday but I can't be there 24/7. I work 2 PT jobs and trying to juggle them around my visiting my Mom is a challenge some days. Never mind trying to keep up with the household chores.... most of them are simply not getting done. I've given up the activities that I used to enjoy so much (and probably should be the things I keep doing) because of the time factor and the fact that I have totally lost all enthusiasm for doing them. I am emotionally and mentally spent by the end of the day and yet still feel guilty for not being able to do more.

But more of what? For a variety of reasons having her at home is just not feasible. She would end up alone for much longer stretches than she is at the hospital and hopefully at the Long Term Care facility. At this point it's the best option that our medical society has to offer.

Yes ... those heavy clouds of concern are still there. It's as if my life has been taken over by the situation and I find it very difficult to focus on anything else. My thoughts are scattered and even following a conversation has become a challenge. This is no way to live yet I have yet figured out how to "let go" - knowing that I am doing the best I can. For better or worse it really is the best I can do.

It's funny really that 10 - 15 yrs. ago the possiblity of finding myself in such a situation simply never entered my mind. I was thinking of all the things my husband and I would be able to do and of the things we were hoping to do when retirement came close. I never ever factored in an aging parent with high needs. At times it still seems like a foreign concept ... one that I feel totally unprepared for. How do we end up here? Where do we go from here? Will it always be this way?

Razz

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Reply by Razz

12 Jul 2015, 4:02 AM

ummmm...... not sure how it happened but it appears that my post has shown up twice. I've been trying to figure out how to delete one of them but haven't found a way.

Can a moderator help me do that please?

Thanks - Razz

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Reply by KathCull_admin

12 Jul 2015, 1:24 PM

Hi Razz
No problem that is what Colleen and I are here for. Perhaps it was just something that needed saying twice!

Katherine

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