Hi folks. I have no idea when or if I will be back. I have no idea when my guts will stop shaking. We were not prepared for this, and have been asked by two doctors, "didn't the Clinic talk to you about her condition?". No. Heart specialists, and maybe once it is fixed, you are sent back home to have others treat declining health.
We don't know how this week will end, other than listening to her sobbing uncontrollably in pain begging me for help and I can't tell her there is none. I can't even talk to nurse or doctor without losing my breath, unintelligible, needing to hand the phone to my husband. I can't be there, and I hate that, but I can't hold it together and I want her to have hope. Her son is losing it now too during limited visits. Grandson tomorrow at noon, and no one else allowed until the next day. Delirium is making it so much worse, lacking reason, memory, understanding, and thinking no one loves her, alone in a strange room unable to walk. Why.
Take care of yourselves.
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39 comments:
Marley, I am so sorry. If your sister is eligible for hospice care, I would recommend that you explore it. They seem to be able to help with pain, especially, more effectively than doctors, hospitals or nursing homes. I must admit that I'm disappointed in the Cleveland Clinic... I thought they were among the best. Please do not forget your own health as you deal with your sister's. Together with other family and her doctors, try to make the best choices for all concerned. You can only do so much and you shouldn't require more from yourself than you can, in reality, give. I will pray that God gives both of you restorative strength and peace in the midst of trouble. I love your heart. All my best...
I admire and agree with what Anonymous said.
Please take care of yourself.
Thoughts and prayers continue !
Love and hugs,
Charlotte in Va.
When they can or cannot help the pain you feel lost. I do hope your sister will feel better. As for the other comments,they were nicely written. Do take care of yourself. Take a long break but please don’t leave us.
I am praying Marly. I am so very sorry your dear sister suffers in this way for so very long.
Oh Marly, I am so sorry. I agree about hospice care. If at all possible, bring Carole home & let hospice take care of her. Hospice came in to take care of both my mom & dad and it was the very best thing we could have done for them both. It will also take some of the burden off of your shoulders. You will be able to see her when you want to & her being home will make all the difference to her. Having her family around her will mean everything.
I am praying everyday for strength for you, Carole & Mark. Please take care of yourself too.
We aren't going to let you go, so don't say you're not coming back. We love you. Stay strong sweet lady & God bless.
It sounds like Cleveland is lacking in the communications area, no matter how good they may be at treating heart conditions. I'm so sorry the reports on Carole have left out so much. If it was an attempt to soften the blow of her condition, they've failed miserably.
I too suggest getting Carole to hospice care. In her home if possible, in-patient facility if not. IIRC from Mom's experience, they have a bit more latitude in pain control. That was 7 years ago, so my memory might be a bit off or rules changed though. At least the familiar surroundings might bring her some comfort. Bringing Carole to your home... I have some serious concerns for you on that. While it would mean you know all that's going on first hand, it would also mean you have no where to go for a minute's peace and quiet.
If you need to take a break from posting, and from comments telling you our opinions on what you should do are :-), I think we'll all totally understand. And miss you very much. But hopefully not forever. OTOH, do you have someone to vent and unload your woes to? Besides Mark and the brats, that is.... (((hugs)))
Marley, I am so sorry to hear about everything that your sister is going through and in turn you. I agree with the previous commenters about hospice. And about taking care of yourself.
I would also get a patient advocate who will then interface with the doctors and nurses and be able to fill you in. The fact that you are not getting updates is unacceptable. I believe that if you went right to the administrator's office, spoke with the secretary and made them aware of your situation, they could point you int he right direction.
Holding you all in my prayers and heart. Take care of yourself and focus on each day as it comes along. Post with updates if you want but know that there are many readers of your blog thinking of you. Be well and hugs.
I agree with what "JustGail" has said regarding Hospice. Their care and understanding would not only benefit Carole but give you some relief and comfort in knowing she is being cared for by qualified people. You need the help they can give for your own well being and that of your family. It has been so sad throughout the past several years and has taken a tole on your own health.
So many out here are thinking of you and wish there was something we could do.
Keeping you in our thoughts ......
A big big hug for you Marly.....
Praying for Carole to solve her pain and troubles and give her peace.
I don't know about how the hospital care is working with you in the USA but hope there is someone with a solution and you can see Carole and this will do you and her good.
Take care of yourself too and hope you are back soon with some improvement of Carole and yourself.
Big hug and stay save.
Truus from Holland
Your heartache is palpable and I'm so sorry. I agree with all the others who are suggesting in-home hospice. They will provide comfort for all.
Marly, I agreed with hospice option. They focus more on care, comfort. Just went through this with mom. My mom was in a nursing home, we could visit at window and weather permitting outside. She had dementia, with hospice I could go in. I like you was fed up with not being able to get info and get in to see how things were. Hospice helped a great deal, so glad they were there. If Carol comes home, care falls more on family. They will have a home care aid come certain number of days/week depending on need, but the family does all other care. It can be alot esp. if you don't have family support. A hospice nurse also comes in weekly or more. They are accessible 24 hours a day. There is also in hospice care in their facility for patients who have pain, medical issues that can't be handled at home. May have more pain control options. The benefit is you will be able to be with her if at home, the hospice center may be more lenient also with family. People can go off and on hospice depending on how they do. Hospice is covered by Medicare, they cover certain supplies and medications. My heart is with you. It is a stressful, scary hard time for everyone. Hospice is a soft place the land. You are doing the best you can. You have so much going on with everyone.
Sending you my very best wishes for your health and that of your sister. My husband is a dementia patient, and we were fortunate enough to be referred to palliative care. If that is an option for your sister, it is worth the time to have a conversation with a palliative care doctor on her behalf. It is very enlightening. Also remember to focus on your own self care. We can't take care of others if we don't take care of ourselves. My heart goes out to you in all of this.
😥
my heart aches for you ... if not for hospice when my mom's health was declining, i think that i might have lost my mind - her hospice nurses were angels on earth and the other support people advocated for her and the rest of us when nerves were worn thin and communication was more than we could handle ... it's not you, you're not alone, and there is help available - you shouldn't have to ask, but do ... do ask for help - you cannot do this alone, it's too much for anyone ... and please don't think that hospice is a death sentence - my mom lived for close to two years under hospice care - without the uncontrolled pain and despair that was too much to bear ... take care, dear one
Having been a part of the Hospice "family" I can assure you that in them you will find compassion, experience and great support. I am amazed that CC does not have
an advocate or psychological services to straighten out the confusion and lack of communication. Carole returned to her own environment with palliative care (including pain treatment) and the presence of family might change the whole picture
There used to be nursing nuns going from room to room, placing a calming, gentle hand on a brow in love and reassurance and changing the whole perspective of patient and sick room....alas. Hospice is perhaps the closest venue to obtaining the comfort you want for Carole and relief for yourself. Continued daily prayers for all.
My heart breaks for you. Please have your husband speak to a manager, a case manager, a social worker, or a patient advocate. There are several levels of "in-facility" hospice care. Bringing her home would likely not be a good idea for her or for the family. One evaluated, treatment of pain, anxiety etc. is a bit more lenient as mentioned above. There are no easy answers, I just went through this with my MIL when I was no longer able to care for her. It is gut-wrenching. My thoughts and prayers.
Marly you have always been so wonderful to your family. I hate that you all are going through this nightmare. I keep you all in my prayers.
Oh, Marly, I am so sad to see you all going through this... It makes me sad to know the communications from CC were so poor. You have been Carole's best friend and champion for many, many years now and it must be beyond frustrating to feel so helpless. I continue to keep you in my prayers and hope that some miracle can relieve Carole's pain and confusion. Please try to take care of yourself, too, my friend. Sending a hug. ♥
I am so sorry for all your pain. It is so sad. My thoughts and my prayers are with you.
Keeping you and your family in my prayers. You are in God's hands. You are not alone. Sending hugs
Marly, I am praying for Carole and for you. I’m so sorry to hear that more couldn’t be done in Cleveland. Please take care of yourself. Thinking of you.....Cherie in WI
The comment from anonymous on 4/8 at 4:56 is better than any response I can make. I suggest you put it on a note card and read it often. Remeber to take care of yourself. You are special. C
Oh Marly, I am so very sorry.
I am so sorry you all are going through this. I know it it scary for everyone. Just trust that God knows what he is doing. You are a wonderful sister to Carole, I'm glad she has you. Still praying.
I am so sorry Marley. The Hospice recommendations especially what Heritage Hall said will be the comfort you are needing for Carole and the rest of the family. Please ask CC for a referral. Prayers for you all.
This is heartbreaking.....
This breaks my heart, I too agree the hospital seems to be lacking in communication. Yes, check out Hospice care, they are indeed specialist in pain care. Comfort is their main goal and are always caring for the whole family. Find out if CC has a Hospice ,unit the hospital where my Mother was ( here in RI ) did so the move was very easy. Take care
So very sorry for you and for Carole having to deal with all this.
I know others have said it, but you must take care of yourself so you can take care of Carole.
Hugs and prayers.
xoxo
Marly, I am so sorry for all that you are going through. Sending continued prayers for you and Carole.
Marly, absolutely heartbreaking for all involved. So many excellent comments above from those with similar experiences. I sincerely hope you, Mark, and Carole's son are able to logically and rationally consider them and make the best possible decisions and choices. Continued prayers for all of you.
I am so very sorry Marly. Wishing you, Carole and your entire family the verey best. I too hope you contact hospice for your sister. Please remember to take care of yourself and come back when you are able. I will miss you.
Kathy
Oh Marly, I am so sorry and I know what you are going through. My mother and I had a similar experience during her most recent hospitalization. I would say that your should explore hospice care. It can be long or short term. Please take care of yourself. We are all praying for you and your family. I hope you decide to return. Hugs.
So sorry to hear all of this. I wholeheartedly agree with the Hospice suggestion, it could make a huge difference in her outcome being in a familiar place, but it would be wonderful not only for her, but for all of you to be able to be with her and spend more time with her regardless of what happens. Just know you are in my thoughts and prayers each and every day. We will miss you but understand the need for the break. We all look forward to seeing you back at some point. May God bless you, all of you.
Marly, I am so sorry to hear this. Please know I am praying for Carole as well as you and your family.
Continued prayers for your family! Miss your grumbles and wise words.
Hospice truly does God's work. Take care, Marly
So sorry you are going through this. Hugs and prayers for you all.
Checking in, hope you all are doing the best you can. In our thoughts.
You are in my prayers.
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