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Hubby home

eibod
Posts: 160
Joined: Mar 2011

Hubby came home today. Hospice intalled hospital bed, special air mattress, suction machine and oxigen machine. They also took care of transporting him home from the hospital
as he is now bedbound. So they have set everything up, talked with me, reassured me that
I was not alone and they would help me do this. Now everyone has left and he is asleep and I am terrified to go to sleep, afraid he will need me and I won't hear him. He is very confused and weak, I was afraid he would be upset to be put in a hospital bed here, instead
of our bed, but he seems to either accept it, or doesn't really know the difference.
He is now having problems swallowing as well, all meds are in liquid form.
I think the nights will be worse, and pray I will be able to take care of him and make
him comfortable these last weeks or month. I know I can talk to you guys if I get too
scared. Thank for being there, Brenda

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm so sorry, Brenda. I know you must be scared to pieces. Is there any way to get someone in during the night, so you can get some rest?

*hugs*
Gail

Lovekitties's picture
Lovekitties
Posts: 3302
Joined: Jan 2010

I am so very sorry your hubby is now at this point.

I can very well understand your trepidation of being alone with him at night. Is there anyone you can call on to stay with you at night...a friend...someone from your church or civic community? Perhaps if you contact your local American Cancer Society they can put you in touch with some volunteers.

May you both find peace in the time remaining.

Hugs,

Marie who loves kitties

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

I'm so sorry. I too think you should consider asking for some extra help,perhaps someone can stay the night with you or even come by during the day so you can nap or just go out to get some fresh air. You and your hubby are in my thoughts and prayers.
Karen

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Brenda

Night time is a hard time in these type of situations. As you said, you worry you won't be able to respond to a call for help. And you worry that you will wake up in the morning and something might have happened at that night.

But, you can't be there 24-hours a day...you're already emotionally spent and if you have to get some rest somewhere, or you'll just burn up and out.

We see that the world is a 24-hour world these days - even in healthcare, but homecare is a lot different than hospital care. So, I can imagine it being very difficult to have someone come over and stay the nights...and if they did, how long could they sustain that? Eventually friends and families will weary...it would seem a "professional service" could be a solution, someone paid to come and sit...of course, you would have to have a certain comfort level to drift off to sleep with someone else in your house.

This must be the hardest thing. I suppose if you knew family or friends who could spell you, even for a short while, it might help you that way. I think for long-term, you are probably going to have to trust.

What might be a good idea is to get one of those baby monitors and leave it next to his bed - and then you can listen and hear if anything gets your attention and then you could respond. This would at least be an option and might bring you a little bit of piece of mind. That might be worth it right there.

I'm very sorry that it has all come to this. We are all heavy in our hearts watching you suffer and being unable to help. This is the heartbreaking thing for us to watch.

Thank you for posting...that is sort of cleansing and the responses let you know that we are thinking about you and hope for a peaceful transition. Just do the best that you can - that's all that anyone can do...and rest and sleep where you can. If you break down - the machine breaks down - and we don't want that.

Thoughtfully yours,

-Craig

Brenda Bricco
Posts: 579
Joined: Aug 2011

I am so sorry for where you are Brenda. We are here when ever you need to talk or need to be lifted. GOD bless you.
Brenda

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

We are all here to help you in any way we can. There is always someone here at all hours of the night. You are a wonderful wife and a very strong person. Even though your husband can't tell you right now... YOU are his rock,YOU are his everything. Stay strong Brenda. Hugs to you and GOD be with you, your husband and all of your family.

Jennie

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

that your husband has reached this phase of his journey. I went through this with my sister, and it's very, very hard. As others have said, if there is someone who can relieve you for a time, especially at night, it could help you maintain your strength for everything else you have to do. My brother stayed overnight a couple of times so that my BIL could get some sleep. For some reason, my sister was at her most alert and talkative (though not exactly coherent) in the middle of the night. Sending strength and the hope for peace your way-Ann

eibod
Posts: 160
Joined: Mar 2011

It is 5:30 am and I am glad you guys are there. Bad night tonight ( or should I say last night). He had a lot of vomiting, lot of pain. Fights the pain med, finally got it in
him with a medicine dropper, then he kept seeing bugs on the ceiling. I did put a monitor
near him, so I can at least lie down in the other room and hear that he is sleeping now.
Hospice will be sending someone to bathe him and change the bed today, they said she would be here for hour and half, so I will take a nap then. Family will be here this week end
to help. Reality is trying to set in that this is the end. I feel numb, should I feel that way? Hospice sent a social worker to talk with me and see if I needed to talk. She
was so young, how could she know what it is like to see your husband of 43 years wasting
away? I told her I was ok, it was too overwhelming to even talk about. Thanks, everyone,
for responding to my posts. It helps to know you guys understand. Brenda

Lovekitties's picture
Lovekitties
Posts: 3302
Joined: Jan 2010

However you are feeling is the right way to feel. The approaching loss of a loved one is one of the most difficult things to deal with emotionally.

I am glad you are going to be getting some help. It is all difficult enough without stressing your body.

Talking about your feelings may help, but the timing should be based on your terms. You know that you can always put it out here and we will be here to hold your hand, pass the tissues and try to help you in any way we can.

Take care dear.

Hugs,

Marie who loves kitties

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Of course, you are numb from all that has been going on in yours and your husband’s lives. You’ve been in and out of the hospital several times and logging many long hours there during all of that. And when you’re at home, it has been just as physically and emotionally exhausting as well.

When we are in “those firefights of our lives”, all of our energies are directed at fighting the immediate problem. We register what is going on at a certain level, but the emotional aspect does not fully come into play yet. As the waves crash around us repeatedly, there is a sort of “numbing” effect.

I think this is the mind’s self-protective mechanism that protects itself and the body from breaking down, when it knows it has to concentrate its effort on the task at hand.

When all is said and done – then, as you pause to catch your breath, all of what you have been through will begin to wash over you…all of the fears and tears will come to you as you begin to see things without your significant other.

And you’ll ask yourself how are you going to do this without him? These will be the toughest times for you, I feel. And I hope there will be someone who can watch over you and give you some company and try and help you cope during those most difficult and trying times.

We will always be here for you….and you can always talk to us. And you can contact me anytime you want to. I don’t have many answers to this life, but when I’m not talking, I make a pretty good listener...at least, that’s what all of my honeys in my life have told me:)

You’ve been through a great deal, dear lady…

I cannot begin to imagine what you are feeling or will feel. Being together for 43 years is a beautiful thing in this world – it speaks of love and devotion to one another – and I admire that greatly. Some people live a lifetime without ever finding that kind of love….you were blessed in that regard.

I can only imagine how it must be to see your partner “acting out” like that and being unable to do much about it. It’s heartwrenching just for me and I’m far removed from the action.

I will say you are a good wife, a good friend, and one of the best caregivers there is in this world…I’d have you on my team any day of the week – and twice on Sundays:)

With a heavy heart…but thinking of you – sending you strength through these words, as that’s all that I have to give, but wish it could be so much more.

-Craig

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

I'm so sorry. I've also been married a long time (41 years) and it is very difficult to think of life by yourself. At this point, just do the best you can. Rest when the oppotunity presents. The baby monitor is a very good idea.

There are many on the caregiver board who have been in your exact situation and may be able to offer you some helpful suggestions, answer questions, etc.

You mentioned he "sees bugs on the ceiling". It is my understanding halicunations are very, very common so don't worry in that respect.

Hugs - Tina

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Just a gentle question: Is there a hospice facility or did you all make the choice to have him end his days at home?
My mother had a stroke and was never the same afterward. There was a slow deterioration of all of her senses and it was baffling and frightening to see her change into someone I didn't even know--and she was my best friend.
Nights were the worst. The Drs. called it Sundowners Syndrome, as it reared it's head as night approached. We had her in her own house with caregivers, with family taking turns flying in and lending a hand. In the end though, it was too much for all of us--the stress was unbelievable and the medical issues overwhelming.
She went into a hospice facility at the end of a December and died in January.
She knew I loved her dearly, and although the decision was hard, I believe she herself (prestroke) would have supported it. The care she needed got to the point where it was beyond our capabilities.
God Bless...this is hard stuff.

Annabelle41415's picture
Annabelle41415
Posts: 6011
Joined: Feb 2009

I'm feeling so much emotion for both of you. I'm glad that he is home though and resting in his surroundings. You will be able to handle it better as well but can understand your concern for not hearing him. My thoughts and prayers are with you both.

Hugs! Kim

wolfen's picture
wolfen
Posts: 1318
Joined: Apr 2009

Please know that you are in my thoughts. As a long married person also, I know how difficult it is to watch your husband go through this. Just know that he loves you even if he can no longer express it. I hope your family will arrive soon to be of some comfort to you.

Luv,

Wolfen

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Being the one who stands by while someone you love is struggling is the worst...

But remembering that he does love you is so important. Also, hospice is wonderful...use them for support for YOU, as well. I did when my mom was so ill, and it really helped to have a knowledgable person there that could answer my questions.

Dutch hugs, Kathi

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

God bless you !

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