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Richie the mud will dry eventually and you will have to bathe the dog. Life goes on
hard as that seems. We never know what is just around the corner and i feel that's just as well. Blessings
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Just me and my dog slogging through the mud.
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Oh Richie sweetheart I feel for you hun xxxx Have you family supporting you. I think its about time someone had a word about life's map - it would be nice if we all knew what was in store for us wouldn't it? It seems someone tore your life's map up but don't despair we cant be there in the physical sense but in the virtual world we are here to help.
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I remember at the end of "The Sand Pebbles", Steve McQeen Is mortally wounded. As he lay dying he kept repeating to himself, with a complete look of bewilderment in his eyes-"What Happened-What Happened, I was almost home?" I find myself asking the same question-What Happened?We were about to retire. We had plans to live out our lives together. What the hell happened?
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Sorry for your loss Sam-it's seems you were a wonderful caregiver to your mom.
Friday's afternoon's are happy hour at dad's AL. YEs if allowed they have cocktails/beer and snacks with the activity director playing the piano for an hour and some have instruments. Since dad moved in last July, I have missed 3 happy hours, one I was ill, one I had to work and the other we had an event to go to. Slept poorly last night and I was busy at work so I did not attend this afternoon. And I feel guilty as next Friday we have an annual event so I will miss again. I am sure my sis who lives 1000 miles away will give me grief about this. Leaving dad after happy hour hour is over which about 4:30 has always been a bit confusing for him partly because many people are coming and going, lots of talking and dad pretty much keeps to himself.
I did spend most of Wednesday with him going to local botanical garden, an errand, lunch and a trip to a greenhouse.
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Just thought I would remind everyone of the 10 things we never tell our parents - I know I have posted it before but sometimes we just need that gentleness in our lives again

1. When you are lost in the haze that is Alzheimer's I cry .. a lot
2. I want for you to be happy but I dont know whether you are
3. That hurts
4. I don't know how frightened you are
5. I'm not perfect as a care Mum but I do try
6. I watch over you when you sleep at night and hold your hand until you stop being restless
7. When you fall the fear in your eyes breaks my heart
8. When you ask to die I die inside because I can't help you
9. Just because I am cross with you sometimes, it doesn't mean I have stopped loving you
10. I hate your disease but I would do it all again because you're my mum
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Sam my condolences sweetheart..being there is just a blessing some dont get to have so well done you for braving the final moments ....I know how tough they can be. She knew you were ok with her leaving you and I am so glad you could make her end peaceful and gentle.

Try now to get some rest for you will need it in the coming days and weeks as you grieve and put her things in order ...my thoughts are with you hun xxxx
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SamI am so sorry for the loss of your Mom -you were there for her and took very good care of her and I hope that helps you and hope you have people there for you now.
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Mother left last night. I was there for her final breath. I was glad I was there for her at the end to stroke her head & tell her everything was ok.
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Jings Jacqui that is serious tough work. Now that there is only one person to manage wont they even come and give you a break for a couple of hours a week?

I am tempted to say go and drop her off at their house so you can recharge your batteries but I suspect that is a no go area for you and I suspect they may just drop her straight back. I am being a bir crass here this is your mum not a bag but hell girl you are entitled to a break sometimes.

But you are where you are in this life so some possible options. I dont know whether you drive or what your financial situation or your mothers capacity either so I am working blind but some suggestions.

Is there a centre near you that you could get mum to? Even if you have to stay with her at least you would get a little more conversation and socialisation than you are right now.

Can you organise for people and their carers to come to your house for coffee one morning? Again socialisation for you and your mum would be beneficial - DO NOT ALLOW THEM TO COME TO YOUR HOUSE WITHOUT THE CAREGIVER NO MATTER HOW NICE THEY ARE.

Would your local church be able to offer a sitter for you one afternoon a week just so you can go and do whatever you want to for a couple of hours (even if it is to only sleep)

Have you considered having a family meeting with your Mum there too and saying I need a break so I can continmue to give Mum the best care I can - use the loss of your dad/grandmother as the pivotal point of you needing time to grieve properly

Are there any charities that could support you?

Could you get your Mum into respite for a week or so ?

You have to have a break now and again hun or you will wreck your health and then who will look after Mum xxx God bless sweetheart
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I am a caregiver for my mother forthelast15 years. I also had my father who had alz for many years. My grandmother lost both of her legs to dietabics. I had the three at one time. I know being a caregiver is hard at times. My siblings want help me at all, but my father and grandmother died three months apart. It was hard too lose to family members that close. Now it's just me and my mother. I don't have any social life to live. I love my mother dearly. I pray daily for strength to care for her. Hat's off to all the caregiver we are special people.
'
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Gawoman, thinking of you and the family. As I read your posts, I'm relearning the stages of end of life. When my mom was going through it, I was too busy panicking. I don't really remember much of it. Just the panic that mom was dying and I didn't want to go through it alone. I cannot say that I would handle it better when dad goes down that road. I'm pretty sure I will be running around like a chicken with no head. Is there a family member or a friend who can be there with you? You may think you can handle it, and I'm sure you do, but it would be great to have someone to lean on to, to share your fears, etc... I'm basing this on my experience. {{{HUGS}}}
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Wow! And I thought I had a bad day. I feel for you and hope you get good rest and things get easier. When I'm at my lowest most exhausted self, I try to remember a funny joke or think these parents can't go on forever like this. Today I was planning to take a day off from caregiving. My own bills, Dr appts, unreturned calls, grocery shopping, work, have all been neglected. The nurse was with them, but dad called and I felt worried and spent most of the afternoon with them dealing with their mail and unpaid bills.
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Big ((Hugs)) gawoman. I'm glad you had that talk with the nurse. At times like you are going through, it's so much better to know what to expect than be in the dark. It's the not knowing that makes it so much harder when someone is dying. Sure, we don't know the time, only God knows that, but it's easier on us to know we are supported by people that have been through it before.

My thoughts and prayers are with you right now. It's a really difficult time for you and MIL. I wish peace for her and for you and your family.
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To answer your question....no I had no clue it was coming to the house. It was a total shock but I also knew that Hospice was end care...so I just stuck the box in the fridge and didnt say anything to anyone in the house about it. Yes I am very confident in the nurse (one particular one) that comes here to the house. All total we've had about 4 come out in two weeks, two of them several times. I sensed yesterday her legs were much worse, fluid all the way up into the thighs. Her face was also swell and her neck was huge. Like I said her eyes looked chinese and it took me aback (a southern word) and almost shocked me. I called hospice and told them and they sent the RN out and she assessed her condition but didn't really say anything except had she ever done dialysis. (the dirty word right now because her brother died immediately when he was hooked up to it) and she said no..and I dont want it. Today the one I'm so comfortable with came out and I talked to her about all my fears and had all my questioned answered and it made me feel so much better. She is a real sweetheart! At least I know what else to expect, and this evening I noticed her toenails are turning dark, which I have read that is a sign. I know this is really gonna be hard on my family, but im more prepared than the rest cause I have watched all this first hand. I appreciate all your comments and support, and please just know I need your prayers and thoughts within this time. I may post questions in case you know and I dont in the next week or so. Bear with me.. and thank you all.
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Ga sorry you were scared by the note on the morphine. It is standard practice in hospices where this is allowed to place a packet containing certain drugs that could be needed in an emergency for a new patient. It is usual for the hospice nurse to come and assess the need for morphine before she gives the first dose and instruct the caregiver on how to give it. Our hospice was never allowed to provide these drugs and I have often had to get a pharmacist out of bed in the middle of the night to dispense morphine. i am glad you have confidence in this hospice nurse and she talked frankly with you. It sounds as though she will be with you every step of the way. Blessings.
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My mother was on Lasix (Furosemide) for years to control her edema due to CHF. All was fine, and then - wham - her legs started swelling up and wouldn't stop. I adjusted the Lasix dose (can't give too much - it puts even more strain on the kidneys) but that didn't help. When HUGE water blisters formed on the top of both feet - I took her to ER. I'll spare you all the folderol that followed. But I found out that the body can build up a resistance to Lasix. They put her on a different water retention drug and that helped the edema greatly. So it made her a bit more comfortable until the next thing happened.
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GA thinking of you hun at this really difficult time stay strong sweetheart xx
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Ga, how hard to be given the morphine packet with that notation on it. Had anybody said anything to you before you read it on the packet?
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I spoke to the hospice nurse when she came out. She is a kind and compasionate person and we absolutely love her. I met her outside and ask if I could talk to her just a minute before going in to see my MIL....she said sure-lets sit and chat for a bit. So I warmed up to the question by telling her of the swelling that my MIL has and how bad it was yesterday. She said the lasix might help but if it doesnt, that my MIL has about 2 weeks or so...then she went on to explain to me how this will progress and I was thankful for it. Ive never been a caregiver except a bit with my MIL brother who died also with the cancer she has. So to me, I guess the cancer is working on her, but to me she is dying with CHF and not necessarily cancer. Im glad I got the facts and I feel really good that I know how it will happen. I knew the day I got the morphine kit in the delivery that it wasn't a good sign. I even talked to her about recieving that and I told her I knew not to open it cos it read on the outside for the RN Hospice nurse.
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Veronica, very good answers! Thank you so much. I was thinking along the lines of what you told me. Its nice to see someone who agrees so much with my thoughts. I have asked the Hospice RN but she didn't seem to want to communicate. There is one Hospice nurse I think I can be frank with, she is very caring and we love her. I will talk to her today. I think she will be honest with me. I appreciate you anticipating my wanting to know!.
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gawoman I am afraid you have reached the stage where you have to prepare for the end for your MIL. All the diuretics in the world can not reduce the edema if the kidneys can not eliminate the fluids. your hospice nurses are doing a very good job so share your concerns with them and ask for honest answers about how long she has, from what you have told us it is probably 2 weeks or less. Your fears of fluid build up in her lungs is very real so be prepared for that.
Now is the time to notify relatives about how ill she is so those who want to visit can do so if she actually wants to see the the visitors. Limit the time spent with her because she will be very exhausted. She is days from being bedbound so be prepared to have all the help needed in place. if she is heavy you need 2 people to turn her etc. Do not resist the hospice nurses if they suggest using morphine and Ativan (Lorazepam) or similar anti anxiety. You are not hurrying her death but helping her pass more comfortably. Any or all of her health problems cause extreme anxiety and it is just compassionate care to use the medications available. The morphine will ease the feelings of not being able to breath. It is merely used for comfort. The build up of fluid in the lungs is very distressing to watch but the patient quickly slips into unconsciousness at this stage. There is a medication called Levsin which is usually used for bladder spasms but has the side effect of drying up terminal secretions. It is a tiny pill and can be just slipped under the tongue.
MIL's kidneys have failed, her heart is too weak to continue to effectively pump blood round her body which will lead to mental confusion among other things. The kidney failure will cause itchy flaking skin plus nausia and possibly vomiting.
This may sound very cold and hard which it is not meant to be but I felt you were asking for MIL's expectations.
Talk frankly with her hospice providers and ask how to proceed from here. With their experience they will be better able to assess her condition and answer your questions. I can only send you good thoughts for strength to help MIL.
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her kidney function is very poor, only pee's about a cup a day. I know its a 4 if the number means anything to you almost a 5. She is on hospice now and they are in constant contact with her doctor so I have no concerns there. she is very weak in her legs and has been for weeks but only been retaining these fluids badly for about 2 weeks. They were swelling before but not like this. Thanks Countrymouse and JudeAH53 for your comments.
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GA contact your physician hun there maybe other underlying conditions you're not aware of. There is a great article on it in medicinenet/edema/page3.htm if that doesnt show then google edema medicinenet and you will find it I am sure xxxx
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Gawoman, the thing about diuretics is that you have to get up to the right dose before they work at all. So the dose might sound high (it's ages since my mother was on Lasix, which I believe is the same as furosemide? - but from memory 20mg isn't that much) but the important thing is to, er, prime the pump and get things started. There are other diuretics if they're still not getting anywhere. Ask your friendly neighbourhood pharmacist if you'd like suggestions. How's your MIL's kidney function, by the way?

The oedema will be making her feel like poo, but don't panic - as soon as the diuretic kicks in it should improve dramatically.
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Have any of you had to deal with pitting edema? my mother in law has developed congested heart failure during her cancer treatment and has a very bad case of pitting edema in her legs, feet and thighs. It showed up in her face this morning and her eyes are really puffy bad. I called the hospice nurse and told her that the water pill they had prescribed was not working. The nurse came out today and ordered lasix because it is severe. Its 20 mg a day, and the side effects sound very dangerous considering she has afib and her heart is not strong at all. Her cancer is not what is going to kill her...but her kidney failure and congestive heart failure seems to be taking a toll. Im afraid she is going to drown in her own fluids and have heard of this. Anyone have any imput?????
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Sam, I know what you mean about a deer in the headlights. I remember panicking for several days with mom. Just hearing her struggling to breath for at least 30 minutes every morning – was very stressful. I felt like I NEEDED to do Something to help her. I don’t remember how many times I reached for the phone and almost completed pressing 9-1-1. You’re doing fine. And Veronica is right. Mom finally passed away when she was left alone. {{{HUGS}}}

Crowded – find a paid caregiver to stay with FIL so that you and hubby can do things with your little one. Check you local law, install hidden cameras only in public rooms (no bathroom or bedroom) that you can check online – if not for the caregiver but also to see how FIL is behaving. Once you find a reliable caring person, make sure FIL understands that this is non-negotiable. You all need some immediate family outing. Best to start now so that he gets used to it as he progresses.
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Bookluvr, thanks for words and advice. I know my husband doesn't want to think about his dad getting worse, but we all know it will happen. I hadn't thought about it so plainly as you put it. Thanks for that. We have already had to miss doing things with our little one or only one of us get to see her joy because one had to stay here to care for the FIL.
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Praying for you Sam. You can do this!
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Sam you are strong or you wouldnt be there hun. Keep the faith and strength - we are all here for you xxxxxx
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