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getting used to hospice
alz+
Posted: Monday, September 4, 2017 10:48 AM
Joined: 9/12/2013
Posts: 3608


Not sure what I want to share today as I am partially avoiding the "bed lock" deal where you want to do stuff but can't seem to stand up and start.

anyway, I had first visit from hospice nurse which was fine but I trembled almost the whole visit. I am still recovering from our misadventure to the 50 year high school reunion, or maybe not recovering from the changes just prior which now feel more permanent.

so all the papers have been signed and circulated and decisions made and here I am waiting for the next shoe to drop.

My son has not called or written since this happened, he knows I hate the phone but I am thinking he does not want to deal with the situation and my daughter is coming for a week end of month. 

We conquered the smells from plumbing but still waiting for decks to be rebuilt with safe steps. Summer ended a month early here which is also confusing me.

****

If I were not on CBD oil I doubt I would be talking. I wet my bed for first time and have a harder time keeping myself clean. 

Went to church yesterday but could not stand for long which is how I was 5 years ago. Feels like I had a nice reprieve that has ended.

I am sometimes fearful of coming to boards, when Iris is gone (she is my original rescuer) I am as scared as trying to cross a street. I used to say hello to visitors who rent around me but now I pretend I do not see them.

Wishing everyone a good life and lots of love and courage 



Andrew60
Posted: Monday, September 4, 2017 11:14 AM
Joined: 7/17/2017
Posts: 342


I always learn from your posts, and I pray your "reprieve " has not ended. Your a strong inspiration for me, as are many others who have the courage to post on these threads.
jfkoc
Posted: Monday, September 4, 2017 11:27 AM
Joined: 12/4/2011
Posts: 21250


I know what you mean. It does not seem whole w/o Iris. Please, don't you leave too.

Protect your mattress. Order a waterproof mattress cover not just a pad. There are more things to do if this becomes more of a problem...they are easy fixes. That said I am certain the whole wetting is upsetting to you. It could be alz or it could be female. 

edited...Hospice will bring you some large disposable pads but still protect your mattress.


Sayra
Posted: Monday, September 4, 2017 12:03 PM
Joined: 8/10/2016
Posts: 4060


(((Alz+))) may you find the strength you need.
BlueSkies
Posted: Monday, September 4, 2017 12:09 PM
Joined: 2/24/2016
Posts: 1096


Oh alz, my heart goes out to you.  I know this must be so difficult for you.  You are handling everything so well.  I just hope I will do as well as you when I get where you are.  My biggest fear is of increased anxiety making me unmanageable.  Does the CBD oil keep that under control for you?  I sure wish I could get the "good kind" with THC.

So glad you have hospice now to watch over you.  They are good when you just need to talk also.  When my dad was on hospice he talked to them a lot about things he felt family could not handle well or weren't ready to hear.  They were wonderful.

Don't worry about Iris.  I am sure she is just taking a break and will be back here posting soon.  We will all be happy to see her when she returns.

Hang in there alz.  I am keeping you in my prayers.  Sending you lots of love and a big hug.  ((((((((((alz))))))))))


Canada111
Posted: Monday, September 4, 2017 1:03 PM
Joined: 8/22/2016
Posts: 263


I am so sorry you wet your bed. You are, as so many have written here, an inspiration to us and a beacon of light. I hope knowing that helps you. You are still cognitively all there. We who have Alzheimer's and the other dementias need you and love you. Every post from you is a beacon of light. 

 


llee08032
Posted: Tuesday, September 5, 2017 6:15 AM
Joined: 5/20/2014
Posts: 4408


Great to see you on board alz+.  Could you possibly have UTI or issue with kidney function? I know you will be so happy to have your daughter visit. Glad sewer smell issue is resolved. 

Iris always seemed to be the voice of reason here for me when things fall apart. I miss her and am very concerned as she has not responded to my last two emails. She is alone w/o family near her which makes me worry all the more. I can only imagine how she must feel...the board here was an important part of her life. There is a big empty space.


kRc
Posted: Tuesday, September 5, 2017 4:54 PM
Joined: 3/3/2015
Posts: 58


Alz,
Think of you often and that lovely profile picture, beautiful shades of mauve.
karen
Mimi S.
Posted: Wednesday, September 6, 2017 9:07 AM
Joined: 11/29/2011
Posts: 7027


Alz+,
You are so brave. I don't think we ever had a PWD on these boards who is also enrolled in Hospice. So we will be looking forward to reading your thoughts.

 

I do hope you and your son can reconcile while there is still time.And also happy that your daughter is visiting for a week.  That gives her a chance to really see how you are doing.

And getting the house repaired will be a God-send.

I know how you feel abut the early end to summer. Too bad the west coast can't send of that heat this way.  I had a cold the later part of summer and by the time I was able to get in the lake, it was too cold!


Mimi S.
Posted: Wednesday, September 6, 2017 9:08 AM
Joined: 11/29/2011
Posts: 7027


Alz+,

You are so brave. I don't think we ever had a PWD on these boards who is also enrolled in Hospice. So we will be looking forward to reading your thoughts.

 

I do hope you and your son can reconcile while there is still time.And also happy that your daughter is visiting for a week.  That gives her a chance to really see how you are doing.

And getting the house repaired will be a God-send.

I know how you feel abut the early end to summer. Too bad the west coast can't send of that heat this way.  I had a cold the later part of summer and by the time I was able to get in the lake, it was too cold!


alz+
Posted: Wednesday, September 6, 2017 3:11 PM
Joined: 9/12/2013
Posts: 3608


thanks for all the well wishes...   

it is so personal to discuss end of life stuff, so intimate. awkward.

tomorrow I am going to a new massage therapist and am scared. I have been getting and giving massage since I was a kid, it was my profession for 15 years. Now I am uncertain about going to the office - I just realized I can write down my yes pleases and never evers before hand so I do not have to speak too much.

the thing with wetting the bed - I woke up, felt the urge and just could not make myself get up. I must have dozed then, and I will now have to be prepared which is really weird too.

today I went out to walk during a break in the rain and my dog joined up with me half way through my walk. That is a first. I had called her but did not know where she was.

The hospice chaplain stopped by, spoke to Keeper that visit. These visits and the help from Hospice has been very kind and slow, respectful.  If I did not have oil I would not be typing about this stuff. Communicating is still possible, I exchange emails still with a few people but it makes me anxious to open emails, and then I forget what I read, and I dread writing something tactless or worse.

the stuff in the house has begun to look like it is full of some one else's stuff. It took too long to get things tidied up to really enjoy it.

all my friends here - how hard it would have been for me to go through this without your companionship and understanding. to have a place any time day or night to write about the ways things bend is a real luxury.

the swimming pool I use down the road opens Nov 1.  I have no idea if I will be able to walk myself there/swim. Everything feels ethereal and  I think slower than time passes so can not keep up with conversations, church service, things happen faster than I grasp them.



Canada111
Posted: Wednesday, September 6, 2017 6:37 PM
Joined: 8/22/2016
Posts: 263


(((((((((((((((((((((((((((((((((((((((((((((((((((((Alz+))))))))))))))))))))))))))))))))))))))))))))))))))))

You're inspiring. You walked today and your dog caught up with you! I knew you could do it. Yesterday you were in bed, and today you got up and dressed and went out. You are making plans to go a massage therapist tomorrow. Regarding things happening faster than you can grasp them, I am experiencing the same thing. You teach me acceptance more than anyone. 


alz+
Posted: Monday, September 18, 2017 5:25 AM
Joined: 9/12/2013
Posts: 3608


surprised how much having Hospice is helping already.

when the hospice nurse sat down with me and talked to me about dying from Alzheimer's I went into a kind of shock. I have been disgruntled about the lack of response and the rejection over the illness, then to finally have someone be kind and thorough about they will help with A, B, C, D eventualities - and those only IF I don't die from choking or pneumonia or the old broken hip scenario or heart attack.

It is so REAL. But it has been a couple weeks or more now and just being taken under their wing has helped my husband, daughter and son which is pretty much my entire help world.

also they recognize the difference between the body stopping functioning and the leaving of the spirit. That time after the body goes quiet but you still feel the person's presence for some time.

Palliative care from Hospice is covered by medicare and my supplement. I told my spiritual sister at church, I really need her guidance as she has been Orthodox 50 years, I think this will help her feel like she can visit me again. The ultimate responsibility is off her shoulders.

Surprisingly beneficial.

love and courage


llee08032
Posted: Monday, September 18, 2017 1:31 PM
Joined: 5/20/2014
Posts: 4408


Alz+,

I carried a negative image of hospice for a few years. My step father who raised me was in a Catholic hospice and at the time of his death I was chastised by a nun for crying. I understood how grieving loved ones could be disturbing to the other patients and managed to pull myself together. But thought there should have been a room or chapel to go to and a hand hold and a prayer at the least. My idea of hospice now is that they work primarily with the patient but also the family and loved ones? You ARE so brave and inspiring to all of us. 

Soon your daughter will be here for a visit  

I hope that having a lot of the practical and physical care provided by hospice free's up families to provide more emotional support for their loved ones while they are being supported spiritually and emotionally as well. It is a wonderful model of care more than likely thought up by some angel of a nurse somewhere. 


Jo C.
Posted: Monday, September 18, 2017 1:57 PM
Joined: 12/9/2011
Posts: 13612


Hello dear friend of ours.   You have been such an inspiration to all of us and one of your most wonderful attributes is that you are open and honest and that has been of great service to everyone here.

The body does what the body does, and nothing shared here is too delicate; we are all human and all of our parts do present challenges at one time or another.  Far best to be up front - one for all and all for one. 

 I am so glad you have Palliative Care.  This is different from pure Hospice as you can still go to hospitals and receive extraordinary care as you wish; this is great for support and freedom to follow what you feel is right for you.  Later, if you wish, you can simply slide into the Hospice mode.  It will all be up to you.

The occurrence with having incontinence at night must be of concern.  However, because you have had a history of urinary tract infections, this may be the cause of what you experienced.   Some urinary tract infections are "silent," that means that they may not cause pain or burning, but the infection is there still the same.  It would be good to have this checked out.

 Some incontinence is "stress incontince, where a person has leakage of urine when they cough, sneeze, laugh or do a strenuous physical action.  This is most common, especially when a woman has reached menopause and especially if she has experienced childbirth.

Another kind of incontinence is, "urge incontinence," this is where the person realizes they have to go, but lose bladder control before they can get to the bathroom.

What to do if this is a new ongoing problem?

Using what Members here have recommended, it would be helpful to perhap wear special undies for nightime if this persists in becoming an ongoing problem issue.

Highly recommended incontinence briefs by caregivers is the nightime, "Abena abri-flex briefs."  They hold pretty well.  If there is a problem, there are special rectangular pads that can fit into the briefs and that should hold all night; I think Tena may make those.

 Another brand of nightime briefthat has been discussed is the "Depends flex-fit" briefs.

 You will need to be sure that you look for "Nighttime" briefs as they are different and more heavy duty than the daytime incontinence briefs.

 As far as cleanliness in the peri area, one can keep disposable wet wipes to use, and one Member recommends getting a soft squirt bottle, like one used for ketchup, and they also make peri-wash bottles one can find at stores that sell healthcare goods and Amazon has them.

 In the squirt bottle, the Member recommends using warm water mixed with Summer's Eve Sensitive Skin Cleansing Wash.  This rinse type wash can be done on the commode.

I got two long protective pads to use on my LOs bed.  They were quilted and machine washable and dryable; the waterproof  part was inside so nothing uncomfortable touched the person's body.

 I put one under the top sheet atop the mattress pad and one over the sheet so if it got wet, all that needed to be done was remove the top pad and replace it thereby eliminating the need to change sheets at night.

 Hopefully, the answer to this happening to you will be something as simple as getting a UTI addressed.  

Take good care of you for us and know that we are with you in spirit and friendship,

 J.


Jo C.
Posted: Monday, September 18, 2017 2:01 PM
Joined: 12/9/2011
Posts: 13612


ttt
llee08032
Posted: Tuesday, September 19, 2017 7:21 AM
Joined: 5/20/2014
Posts: 4408


There's our angel of a nurse. Hi Jo C!
Jo C.
Posted: Tuesday, September 19, 2017 9:14 AM
Joined: 12/9/2011
Posts: 13612


Hi right back at you, llee!  Though I am not writing and posting much at this time, I do come and read and keep up with what is happening with everyone.

I do not want to be technical, but when things pop up like alz+ just experienced, it can be a real issue for the person.   Mostly, when I am here, I read with my heart, but practical things will always pop up when in "nursie" mode.

I have been missing from writing on the Board for awhile, our son who has always been healthy and had no problems, had a massive heart attack and a week and a half ago he had open heart surgery with four coronary artery bypass grafts, "CABG."  His prior primary doctor for months kept telling him he had an "ulcer," but he did not.    The ER EKG found he was having multiple small heart attacks. 

 He lives three hours away from us, and he has had some post-op issues.  CABG patients often have some months of difficulty processing some thinking and as he said, he feels "mutton headed."  Another issues can be high irritability and significant moodiness and he has developed that which makes things difficult.   He is divorced and lives alone, so that too is a challenge.  His discharge from the hospital after only four post-op days happened suddenly at 8:00 pm at night.  Talk about running around getting things done.

 His discharge prescriptions had a major error made by the pharmacist and he was without a needed med for six days until I somehow had a light go off in my head and discovered it. 

 He is a retired police officer who had to go out on a disability from a neck injury after 21 years of service.   His Worker's Comp pays only for neck issues and he has no health insurance or full pension as he needed six more years on the force to have full benefits.

  The Affordable Care Act in California would NOT let him purchase insurance with subsidy in a private insurance plan.  He mandatorily had to take a Medi-Cal plan.

 This has been a debacle of epic proportions. He cannot see a cardiologist post-op without an authorization from a primary MD.  He is assigned to a new clinic and cannot get an appointment until October 30, which is far too long despite his being a fresh post-op open heart patient.   I am busy now trying to get this resolved and it is like trying to nail Jell-O to the wall.

This is only part of what is going on and I am now in the throes of spending hours per day slogging through the system  making calls and using the computer for research.

 Today will be another attempt to get things set straight.   We were with him for the first days after surgery, then my daughter flew in from Texas to be with him for a week.    This is his first week alone.  Have stocked the frig and freezer with food, hooked him up with Uber as he cannot drive for six weeks and have him on speed dial.

 If you have good insurance, please give your insurance card a kiss next time you take it out.   What a difference decent insurance makes. 

 We looked at trying to buy into a private plan for him, but the cost would be about $600 a month for a simple plan if he can get a subsidy to bring it to that level, and the annual out of pocket expense is over $6,000.  MD visits about $50, Specialist visit $70, high cost for everything including three figure fee for any ER visit.   So, it is not affordable despite the title.

 Anyway, our alz+ has some guardian angels with her from Palliative Care through local Hospice, that is just an awesome service with lots of available support.  It may be that their Palliative Social Worker may also be able to hook in some household help if desired.   I am so glad that service is there.

 Please do take care everyone, you are all precious,

 J.


BlueSkies
Posted: Tuesday, September 19, 2017 2:37 PM
Joined: 2/24/2016
Posts: 1096


Jo C. , 

So sorry to hear about your son.  He is in my prayers.  

What a mess the medical system can be.  Kissing my insurance card right now!


llee08032
Posted: Wednesday, September 20, 2017 7:47 AM
Joined: 5/20/2014
Posts: 4408


((((((((((Jo))))))))))) big bear hug for you!

So, so sorry to hear you're son is ill and w/o health benefits! It does not make sense like o many things these days that a disabled police officer cannot get healthcare w/o going bankrupt. I know you and that you are the greatest advocate he could have and that you have tried everything possible.  Praying for you, his health and a bright light at the end of this tunnel!


Mimi S.
Posted: Wednesday, September 20, 2017 9:38 AM
Joined: 11/29/2011
Posts: 7027


Well said. Our JoC and family are always in or hearts and prayers.
Canada111
Posted: Thursday, September 21, 2017 9:27 PM
Joined: 8/22/2016
Posts: 263


Jo C, Sending prayers for healing for your son.  He is very fortunate to have you as his mother.