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Old 07-13-2013, 06:16 PM   #1
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Desperately needing answers

Question desperately need answers

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My mother is the late stages of Dementia, she is incontinent and is in the bed as she will not or can not move herself. She is total care, and my husband and I are her caregivers. Today we had to take her to the ER because she woke this morning with her mouth hanging open and unable to speak clearly just babbling. She has had several strokes in the past. It ended that she had a severe UTI and was dehydrated. She refuses to drink liquids most of the time. The ER referred us to HOSPICE and they are coming tomorrow morning to assess her. What I need to know is why is she snoring yet she is awake. Her mouth hangs open and she is snoring !! I asked the nurses at the ER and they didn't really give me a good answer. They said it was probably from the UTI, but this is not right. I don't understand, is it getting close to the end for her? I am truly scared, or confused or something. I have Atrial Fibrillation and have been in it all day from the stress, my wonderful husband is in constant pain from us having to lift her full body weight. Will hospice send help? Mainly I am concerned about the snoring while awake thing..anybody know what that is?

 
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Old 07-13-2013, 08:28 PM   #2
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Re: Desperately needing answers

One only "snores" when asleep. The sound she is making, if she is truly fully awake and I seriously doubt that - is a breathing issue. You can make the same sound due to obstructed breathing when awake but it is not technically called "snoring." Hope this helps. SOunds like she is nearing the end. Sorry your doctor has not recommended respite care or hospice previously.

 
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Old 07-13-2013, 08:46 PM   #3
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Re: Desperately needing answers

First, you need to breath... it will help you calm. I can her the frantic in your typing. You have done what you can do. You got her to the ER, found out the problem (UIT and dehydration), and you have followed up on calling in Hospice. Hospice will be there tomorrow and you will get many of the answers that you need. They are amazing, understand the symptoms you are seeing, and can tell you, specific to your Mom, what is going on.

Dehydration is a huge problem with the elderly, especially those with dementia. They do not know they need to drink and they don't want to drink. They are more susceptible to dehydration when they do drink. Be sure they are not drinking coffee, tea, or carbonated beverages (soda,pop) because all of these tend to dehydrate rather than hydrate. You can try juices, flavored water, or other liquids. Water is bland and many will not drink plain water. Even broth soups are good. Dehydration and incontinence both tend to lead to UTIs. It is nothing more than a bacterial infection of the urinary tract. The proximity of the urinary tract to bowel incontinence... you get the idea. Add in the dehydration which prevents the proper flushing of the urinary tract and... you get the idea. It happens.

UTIs can call major changes in a loved one with dementia. In us, they are more a minor nuisance. For your Mom... they can cause major changes and some can be long lasting. It was a UTI that literally knocked my Mom off her feet and caused her to become non ambulatory. It was a UTI that lead to her loss of ability to communicate as well. Let me try to explain....

Mom was always a wanderer. She walked/paced constantly. At time for as much as 20 hours a day. I had noticed that she was walking slower, shuffling, and beginning to lean to one side. It was more difficult for her to get up. From these clues I knew the day would come when she would no longer be stable on her feet. What I didn't expect was for it to happen in a day. She was having more difficulties than usual on Friday. She went to bed and slept all night. In the morning she got up, with difficulties, walked the 8 feet to the wall beside the bathroom, leaned against the wall, slide to the floor, and never walked again. Diagnosis... UTI! The dementia was taking away her ability to walk. She was struggling to maintain that ability. The UTI was just enough of a disturbance to finally take that ability away. Yes it would have gone away sooner rather than later, but the UTI was sort of the straw that broke and took away her ability to ambulate.

The snoring may actually be apnea. She will not breath for a few seconds and then breath in sharply.. which can sound like snoring. The mouth being open actually aids in the breathing. I could very well being a result of the UTI causing her condition to deteriorate. The Hospice nurse that comes for the assessment will be able to tell you for sure exactly what is going on.

I do understand being scared, confused... and the or something. If you have kept Mom at home with you this entire time you have done well... and I am sure you are completely and totally worn out to the point of exhaustion. I can not tell you if this will be the end or not but please know that you have done what you can for your Mom. Hospice will be a blessing. They will send help in the form of nurses, doctor if needed, CNA's, volunteers, and a social worker for you to talk to... even a Chaplin if you wish. They will provide supplies and medication.

What you need to do is calm yourself so you will be there for your Mom. Even if it is the end, you will want to be with her. We fear death because we do not understand it. Your Mom has traveled a long slow road. She is as tired as you are. Sit with her, talk to her, tell her what is in your heart. Let her know how much she is loved and that you know she loves you. Let her know that you will be ok after she has left you. Make your peace. Then let what will happen happen. We so want to make it better. We want to fix it. We fear what we can not do.... not what will happen. So just hang on until Hospice (the Calvary, the angels) arrive. They will know what to tell you and bring in the resources that you need.

Love, deb

 
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Old 07-14-2013, 10:24 AM   #4
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Re: Desperately needing answers

Okay the hospice nurse came and felt that Mom should go to the HOspice house for a few days to make her more comfortable etc. When we left she was staring up at the ceiling, unable to talk or swallow and her mouth still hanging open like she was struggling to breath. We got to the hospice and they got her all fixed up in the room and they let us in and she was laying in bed saying she was hungry and wide awake, mouth shut, bright eyed, she was offered cranberry juice and drank it through a straw where as she was unable to suck a straw only an hour earlier She would blow bubble rather than suck. Also she ate a container of pudding and wanted mashed potatoes which she ate a couple spoons full. Before we took her she would not eat or swallow and anything we put in her mouth would fall out. She ate , drank, swallowed. I felt like a real idiot. What is that all about? I feel like a complete boob.

 
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Old 07-14-2013, 12:27 PM   #5
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Re: Desperately needing answers

Helen, you are not an boob and I am sure that Hospice understands what happened. They did the assessment at your house. They saw what you saw. They also know that your Mom had just started the antibiotics for the UIT! Your Mom is obviously a fighter. YES... this is the UTI!! Lucky for you, Mom was able to bounce back with antibiotics and hydration Don't feel like a boob... count your blessings that Mom is a tough lady still fighting!! ... and that you did what you could do to give her that chance.

Yes, Hospice is amazing. They know what to do. Ask them the question you have... all of them... including your own emotional turmoil over this situation. They will stabilize her if possible and then Mom may be able to go back home. But they will continue to home visit and be your back up. Boob... not this time You have done exactly what needed to be done for your Mom. Her time will end, probably sooner rather than later... so use this time to just enjoy your Mom. And while she is in Hospice House.... get yourself some much needed rest so you will be refreshed for the remainder of your journey with your Mom

Love, deb

 
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Old 07-15-2013, 09:46 AM   #6
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Re: Desperately needing answers

My husband had a very bad bacterial UTI infection and was shaking and not speaking and had a high fever. He was sent to the hospital and stayed 5 days with antibiotics and a suprapubic catheter. He has since had a bacterial infection and he can't speak, shakes and has a fever. Fortunately a doctor said he need a PICC line and has been administered antibiotics 2 times a day for 7 days and it is a miracle how good he is doing. It really affects their speech and mind when they have an infection. I'm hoping they keep the PICC line and that if he has chronic infections, I can continue to administer the antibiotics at home. I wish you well with your mom.

 
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Old 07-15-2013, 09:52 AM   #7
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Re: Desperately needing answers

Thank you for the answers and support everyone. I just came from Mom and she is sleeping constantly, she opens her eyes on occasion to sounds and people entering the room. She is no longer eating drinking, etc and the only meds she is receiving are pain meds. I spoke with the Dr this morning and she said Mom is officially Dying however she has no idea how long that will take. I told her I just want Mom comfortable both mentally and physically.. that is all I ask. She may come home to pass or they may just keep her I am not sure I understand how the Hospice thing works. Can anyone make that a little clearer for me? I know I am asking so much but I don't know anything about this. They asked me about arrangements for Mom when she passes. That hurt....but they had to ask...It is so heartbreaking to sit and look at my Mom, its not her....I knew this time would come but I think I always denied how it would actually be. I always prayed she would pass in her sleep and I selfishly wouldn't have to deal with my emotions. I feel so raw right now......Chris

 
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Old 07-15-2013, 11:05 AM   #8
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Re: Desperately needing answers

Chris... actually this is what I expected. Many times, close to the end, a loved one with dementia will have a period of lucidity when they seem so much better. It is a bit deceptive but I truly believe this is their way of giving us one more happy moment to take with us into the future. You were so full of joy yesterday. Hang on to that feeling. It was a gift to you...

We all know the outcome of this disease but we do don't want to think about what it will be like. We do cover our emotions with denial. Death is not easy. It is a process just like birth. It has no definite time frame. It can take hours or it can take days. It can be relatively peaceful or it might be more difficult. Keeping Mom comfortable is the ultimate goal and Hospice does that well. The rest is up to your Mom.

The decision to leave Mom in Hospice House or to take her home will ultimately be up to the family. If you want her at home she can be taken there. If you would rather her be at Hospice House then you can request she stay there. If you take her home there would be nurses and care managers assigned to help you. You can call a nurse at any time. Which would you be more comfortable with? They will work with you to insure the best experience possible for you and your Mom.

We do not want to think about making the necessary arrangements after our loved ones pass but in reality it is exactly what needs to be done. I suggest that anybody who has a loved one with dementia do this early in the process. That way you are not trying to scurry around finding picture, calling funeral homes, writing obits, and making important decisions at a time of great stress. Please do the planning now and not after the fact.

Again I will say it's difficult. You emotions are running the rampant. There is joy and sorry, happy and sad, anticipation and relief all blended into a moment. Again I will say, hold your Mom's hand, talk to her, tell her all that you have to tell her. Let her know you love her and that you will be ok when she leaves you. Sing her favorite song and retell the stories she has told you so often. It is ok to laugh at a funny memory or smile at a beautiful moment. It is ok to be sad, to cry, and to grieve. Let yourself feel what is there to be felt. In this there is no right or wrong... there is only your way. If you find yourself stuck in an emotional overload... ask to speak to the hospice social worker. They are amazing and can help guide you though the storm of emotions that you will experience. They are there for you!

As for asking questions.... keep asking. Ask anything you want to ask. Know I will keep you and your Mom in my thoughts and prayers for an easy transition... peace and comfort for both of you.

Love, deb

 
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