Saturday, November 29, 2008


These are old book covers from the late 1800's. My brother brought them over for me the other day. Many of the decorative features are raised.

I can use them as covers for books to bind or in a collage perhaps. They are fairly large.

I have purchased enough books through the year for the local independent bookstore to honor me with a free calendar. I think this is quite lovely to do especially as small bookstores like this are usually on the edge of red.

Mom has really gone downhill in the last two weeks. She can't walk beyond her bedroom/bathroom area. So she is bedroom bound. Mostly she lies in bed sleeping, looking half dead to me. Occasionally she sits up in her chair and reads. If she walks further it becomes hard for her to breathe. She has daily pains in her chest and takes the nitro. I don't know if all this is normal for people with chronic heart issues. Somehow my talk with her doctor was not satisfying to me.

My brother spoke to the doctor via the doctor's secretary about getting Mom oxygen and he said she'd have to go to the hospital for a 6 minute walking test. Is he kidding? I can tell you right now she can't walk for 6 minutes. So the test would just be to satisfy the doctors that a test was done. The trip to the hospital is an hour round trip. Who would put an elderly lady through that??

It is so hard to know what the proper procedure around all this is. I long for the days when doctors came to the home. Is it time to hook Mom up to hospice?? I asked the doctor but in the end wasn't clear on whether he would sign the order or not. So, everything is up in the air and in transition. It is an interesting adventure, for sure.


Jude said...

I know , different countries, different ideas. But, I do have some knowledge in care. If the situation is upsetting your mother or yourself, it probably is time to think about hospice care. Was there anything discussed when you went to care for your mum, e.g. does she want to stay in her home , and are you prepared for the final days and hours, sorry to be so blunt. My thoughts are with you, wish I was closer.

Mim said...

Just home and catching up. The book covers are awesome and just so beautiful.

Sorry to hear about your mom, having just spent the week with my old dad, I know what you mean. Dad could never take a 6 minute walking test and the appointment would just about kill him. But the oxygen might make her feel better - so you are in a quandry.
How about calling hospice and having them come out and doing an evaluation on your mom? (Without upsetting her!!)They might be able to advise you more than the regular doc can.
Good luck dear....

Teri C said...

Gosh, your Mom does not sound good at all and it sounds normal for someone with her problems. Showing her love is the best thing you can do now and I know you are!

Your books are gorgeous!! I always like to keep small bookstores in business.

Annie said...

I know you must be sad about your mom. It sounds like she is nearing the end, but you never know. If it were me I would take her to the doctor, just so you all know where she is and what to do. It is awful that you can't find a doctor that will come to the home, even vets come to the home. Good luck and my thoughts are with you.

~Babs said...

Wonderful book covers Suki,great journal covers. I'd be hard pressed to cut them up for collage,they're so beautiful.

Stanyan Street and Fields of Wonder are on my bookshelf, along with Listening To The Warm.

This difficult time for your Mom, you and your brother can be eased by contacting either Social Services of the hospital,Visiting nurse Assn. or Hospice people. (all available by telephone)
They can advise you as to what needs to be done; when. Often the doctors offices aren't very helpful, for whatever reasons. There is absolutely no charge involved with Hospice,,and a person need not be "on the verge of death" to call them. I too don't mean to sound so blunt,,but there are services available, for free that can make life smoother for all of you.
The test you mention probably has to do with stisfying Medicare protocals,,,,and these professionals can help with that kind of thing also. Lots of red tape involved, as you know, in the medical field. They can be of huge assistance in sorting it all out. So easy to be confused and not know which way to go.
All my best to you and yours Suki, from the bottom of my heart.

Kikipotamus said...

What a hard position to be in. You strike me as so strong, dealing with this.

Britt-Arnhild said...

I am so sorry to hear about your mother. Glessings to you both.

Beautiful book covers.

m. heart said...

suki, i'm so sorry about your mom. i can definitely empathize - my mom was in so much physical pain on thanksgiving she has been staying at my brother's house since that night, unable to be left alone. it's horrible to see someone you love struggling so much. my brother, being there with her as you are with your mom, is bearing the brunt of it and emotionally wrung out.

and it is very confusing to navigate the health care system. a trip to the hospital sometimes feels as if it does more harm than good. i think hospice is a good idea, at least to get more of a support network in place.

my thoughts and prayers are with you both.

ps: what gorgeous book covers your brother found!

Lynn said...

What's with this doctor? Do you need a second opinion? I'd absolutely ask for someone to come to the house to see her. Doesn't he understand that she can't walk a few steps without being out of breath? Where is his SENSE? OY. I'd be furious. Does she need to be taken by ambulance to the hospital? Would insurance pay for that? I sure wish you well with this huge problem. Must be so hard to watch her in this state...but if there is something that can be done to make her more comfortable I'd sure want to do it and I know you do too.

Those book covers are beautiful! I know you will make something awesome with them. Nice that your brother gave them to you. Now if he'd just give you the house....

Cris, Artist in Oregon said...

Oh Suki.. these covers are lovely. Of course I would say that as they are all bird themed. wow. Nice for covers on books for sure.
So sorry to hear about your Mom. We had hospice come for my Mom. but mostly it was Dad and I and a few friends who offered their help. I think you got some pretty sound advice from everyone here. I would check it out.Sorry if I missed a few posts I took a mini break from computer and read.

Karen Mowrey said...

The book covers are beautiful and very sweet about the free calendar.

So sorry to hear about your mom and the doctor with the lack of compassion. I would try calling your local county health nurse or the office for the aging to see if anyone can give you more advice...I am sure hospice would guide you too. How hard it must be for both of you. The pain meds can affect her breathing but not much you can do there as pain will affect so much more of her. Many prayers Suki.

Blue Sky Dreaming said...

Suki, I am in aggreement about receiving an evaluation either from hospice or a visiting nurse organization. Comfort care for both you and your blessings.
The calendar is great and the book covers have all sorts of potential.

Dianne McNaughton said...

Dear Suki, so sorry to hear that your mother is so poorly, it is not easy when you have to make all the decisions about her health care. Babs and others seem to have given some good advice relevant to your country.
I love the book covers, I am sure you will use them to create something wonderful.

sukipoet said...

Hi Jude. I dont consider what you said blunt at all, just insightful. For years Mom said she would go willingly to a nursing home when the time came, however I think now she would prefer to stay at home as long as possible. As I just watched my SIL deteriorate and die, I know it is a difficult process. Mom doesnt "get" hospice and hasnt asked for it.Nor has she asked for oxygen or a wheel chair. These are all my ideas of things that might give her comfort and ease her situation. She keeps saying "I'm all right." However, both my brother and I have witnessed a great change in her mobility, energy and life force in the past two weeks. The idea of calling hospice is my own. I feel I need some outside evaluation to help us all get a focus on how to best care for mom. I dont know that I am prepared (emotionally) for Mom's final days and hours though, as she's my Mom and I can't really be objective. Thanks so much for your thoughts. I really appreciate them.

Mim,That's interesting to hear that you know yr dad couldnt do such a walking test or even attend the appointment. I do agree that the oxygen might make Mom feel better too. It will do no harm to call hospice I guess and see what they say. Thanks for the suggestion.

Teri, thanks. I hope I am doing the best I can for mom while also taking care of myself. I love small bookstores and always patronize them if possible.

Annie, I dont think mom would consult with any doctor except this one she has had for 28 years. Mom still thinks she is okay and doesnt need extra help. She plans to call the doctor herself on Monday, to say what I do not know. Probably that she doesnt need oxygen and it is her daughter's idea not hers. I dont think many vets around here come to the home although i finally found one on Cape Cod who did. thanks for your good advice, annie.

babs, thanks a lot for your ideas. I thought what you say too

soulbrush said...

suki i think that the others here have given you some good ideas. would hospice come out and evaluate her? mostly i think it has to be what you want deep in your heart too...whatever you decide, do not put yourself through any 'guilt' feelings, you have done and are doing your best for her> i truly hope that if it is her time, she will go quickly and easily. book covers are marvellous, but not what's on my mind when i read this post.

sukipoet said...

Babs, something funny was happening to my comments thing so I had to post that one to you without completing it. Yes, I had thought also that hospice people could navigate the red tape areas better than myself trying to communicate to MOm's Doctor. I dont know if it is free for mom though unless the doctor signs an order for the services. But best thing to do is call and find out.

sukipoet said...

Kelly, I am not feeling all that strong. I know i have certain limits as far as what i can do but so far we havent reached those limits. So we shall see.

Thanks Britt-Arnhild.

M. Heart. I'm so sorry your mom is in such pain. It must be so sad and stressful that both your parents are needing so much care at the same time. It is a dilemma with lots of grey areas and no easy answers. I tend to feel that unless something is a dire emergency a trip to the hospital is not necessary. Of course once one is hooked up with hospice, there are no emergencies.

Lynn, I dont think insurance would pay for an ambulance for mom to go take a test. I think they just are to be used for emergencies. I really dont understand the Doctor's saying what he did, but Mom would never ask for a second opinion. She worships this doctor. Also, she still things she has the full reigns on her health care situation. Pretty much true of course as she is still mentally sharp however if her body is just lying there and her breath is labored and she has chest pains daily then maybe another persons reflections on the matter is pertinent. It is to me anyway. Yes, you did make me laught. Bookcovers are fine but what about the house.....ha.

sukipoet said...

Cris, I took a mini break too and only partially did my blogging. One needs to step back once in awhile. Even with hospice in place it is the family and friends who do the majority of the helping, I know that. Or a hired nurse which could be done when needed.

Karen, isnt it funny but you know I think this state doesnt have an office for the aging. Mass. had one and they had quite a number of services. Also, that office is an organizing agency for lesser agencies and resources. We do have VNA, private home care agencies which tend not to have workers to send out to the boonies and hospice. VNA only come out if the patient has recently been dismissed from the hospital which is covered for 3 months. But I will at least call all these people and see what happens.

katie jane said...

Suki, so sad about your mother. I know it must be very difficult for you. I can't believe the doctor won't just prescribe oxygen. What's she going to do, overdose? Can you call for an ambulance to take her to the hospital? I guess I agree with everyone else about the hospice. It's gut-wrenching, I know, but in the long run probably better for you and much better for her.

The book covers are lovely. Surprising that your brother gave them to you. I think I would use them for other handmade books, not cut them up.

Cestandrea said...

Hi Suki, and oh, what a difficult time for you and your brother. I see too that everyone here is giving sound advice and hope that some of it helps you dealing with the situation. I just send you a big hug and a little virtual comfort, if that it possible. My thoughts are with you and your mom, too.
PS the book covers are "magnifique"!

patti said...

Oh Suki I know what you're up against. I had to take my mum on trips to the specialist when she could hardly walk, sufferred dementia and so couldn't be left anywhere while I went for wheelchairs. They wouldn't come to us. I was so angry to be made to go through that process, when I knew already what the outcome would be.

Push those doctors and health care people for a solution. Unless you push, nothing will happen. This is my experience with our health system here in Aus.

You know better than any of those professionals what's required, you are living with your Mom day in, day out.

I hope you are able to connect with the right people to help your Mom.

Lots of love & support xx

marianne said...

The book covers are just beautiful You can do wonderful things with them I geuess.

Sorry to read about your mom!
Is it really impossible to get a doctor to her to see her.....?
It is not fair having to put her through such a trip and test....... While you already know the result of such a test: she can do it.
In fact you don't even need a doctor to decide what is good for her, I think you do!
Wishing you much strenght in this difficult period Suki!

Take care and a warm hug >M<

sukipoet said...

Soulbrush, thank you for your vote of confidence that I am doing all i can. Sometimes I think I am not. Mom still is quite alert mentally and thinks she knows her condition which she does to a certain extent however i also think she is overlooking a few indicators. Still, she seems better today, Sunday and trying to walk some up and down the hall with walker of course. She may well live another few years, how does one know.? Folks live on in a semi comatose state for years sometimes I guess. Though it is not that bad with Mom yet. Thank you Soulbrush. Oh and hospice or a VNA nurse would defintely be in part for me to have someone to consult with re: Mom's changing conditions.

sukipoet said...

Katie Jane, thanks for your thoughts about Mom. I'm going to look into all these suggestions. I should have said assemblage for the bookcover use, rather than collage. I wouldnt cut them up.

Andrea, thanks for the virtual hug. Everyone is so kind and thoughtful. sometimes it is hard to be objective when it's your own Mom. I know there is a solution out there somewhere.

Patti, what a difficult time you had with your Mom, searching out the best solutions for her illness. I agree that myself, as daily caregiver, has a better finger on the situation than the doctor--esp as Mom tells him "I'm all right." We will just have to see what arises as we proceed I guess.

Hey Marianne, thank you so much for your thoughts. One only needs these tests so that insurance will cover the services. Regardless, I'm not going to drag Mom to the hospital uncecessarily. There must be other ways to get her evaluated. There must be other ill persons who cant make it in to the Dr office and hospital. When my SIL was diagnosed, that was it, she never went back to the doctors or the hospital but she was with hospice. They can get these services with no questions--the hospice nurse does the evaluation. I am just unsure whether mom is 6 months away from dying yet. How can an ordinary person know this?

marianne said...

I guess that is impossible to know for sure.....
A friend of mine works in a hospice and she told me that once a patient brought to die recovered so much that she was sent home again.....
I'm sorry that insurance etc is making the best care for your mother difficult, so sad.
I'm sure you know whats best Suki! Only they need a silly test....

hug >M<

Kim said...

Suki, I am afraid I am not all that conversant with the medical community and what the offerings are out there. I do understand that no matter what, you have to stay on these people and remember that they are employed by you and your family. I get the feeling in these days of big medicine, so many people get pushed to the background. I know with my parents, I had to phone and kick and shout in order for my parents to get some satisfaction. I think now they know there is someone who is going to stand up for these two people to make sure they are receiving the health care they need and deserve. You or your brother might phone back the doctor...asking to speak directly to her or him...and say right out that your mother cannot do a 6 minute test, you are worried as she seems to be slipping and uncomfortable when she moves around and find out specifically what your options are - and even say you would like someone to come to the house! Sometimes it is just the way you present yourself to them. If they know you will not stay off their back until you get satisfaction, then they may not jerk you around. At least that is my experience. I do feel for you and do wish you some satisfaction with this. It really gets to me as this is just the time when you do not need to be doing this and taking this need support.

I really love the book covers your brother has brought to you. They are incredibly beautiful and I know you are going to do some truly beautiful things with them.

How nice for you to get the calendar from the book shop. It is a very nice gift for them to do. I just love all those beautiful independent book shops in New England.

Suki, I send you great energy as you work with your mother and here is a big hug for you.

sukipoet said...

Marianne, I have heard of that too, people entering hospice and then living for years more. Again it all centers on who pays for the services. Mom's insurance will pay for a lot but they tests etc have to be done I guess. Versus Mom could pay for some services herself too and not go through insurance. Of course navigating the medical community is pretty new to me as for my own health I go to an alternative homeopathic healer and rarely a doctor. My dad was a doctor and mom a nurse so they have/had a great respect for doctors. But medicine is very different today due to the insurance companies than it was when Dad was a doctor. I guess I must just see what can be done.

sukipoet said...

Kim, thanks for your insights and experiences with your folks. I think you are right, persistence and speaking firmly are key notes in dealing with the medical profession.I will do my best but part of the problem is Mom wants "no fuss" and tends to bow to what the doctor says over and above what I who am living with her and observing her says. She has already said she will phone the Doctor on Monday and talk to him and I think she may tell him she doesnt need any help, she is just fine. So I also need to be firm and consistent with her to let her know it is myself who would like second opinions and an assessment of her current condition so that if there are things that can be done to make her more comfortable we find out what they are and implement them. To help her and also to help me feel that all is being done to make her comfortable and at ease at home. Thanks for the energy, mine goes up and down too, and the hug. Blessings to all of my dear friends, Suki

Kim said...

Good Suki, I am glad you can make it clear you need these things for yourself. That is very important for your mother as well. The other thing to consider is maybe you need to speak to the doctor without your mother knowing about it. It sounds like at this point it is important the doctor has the input of the person who is your mother's primary care giver. You are also so very right that the medial profession is an entirely different animal now than it was when your parents were in practice...some of it good and some of it not so good, I am sure.

Even if no where else, I think you have a lot of support here, Suki!