RSS Feed Print
need help with the end
irisized
Posted: Saturday, July 2, 2016 8:59 AM
Joined: 10/4/2015
Posts: 440


I probably should not be here, but hoping some of you can guide me along the end. DH has early onset, he is 62. I lost a sister to cancer, but this is so different as each person checks off different boxes... dh has declined quickly, he is also type 1 diabetic and had seizures and tremors. He is now down to 146 (was 175 last june) for the last 4 days he ate almost nothing, stayed in bed at least 23 hours...then yesterday he wanted mac and cheese....it took a while to figure out what he wanted....then he ate 5 little chicken nuggets??? and he was up more...he has no clue who I am ...I can make out some things he says... I am told this is the "weeks before death" ....his blood sugar is all over the place... he is on Haldol for agitation which they increased for night time yelling.... I guess seeing him yesterday ...I don't see how this is so close to the end...I know each person is different.... I think I am just scared and trying to prepare....I hope no one takes offense at this.... I am so sorry for all your losses and the pain you had to go through....

gentle hugs...kathy


Sea Field
Posted: Saturday, July 2, 2016 9:11 AM
Joined: 8/5/2012
Posts: 1872


Kathy,  no apologies needed.  you are not in any way out of line with your question.  We have all been there.  We understand.

My DH had also lost significant weight (200+ down to 135) by the end.  His ability to ambulate was intermittent.  He didn't recognize me about half the time.

Then, the day before he passed away, when I picked him up at adult daycare, I was told that he ate amazingly well that day.  As I walked him to the car, I noticed how much difficulty he was having moving his feet and legs and wondered if we were about to enter another span of days where he couldn't walk at all, or sit up,...   He had been having these episodes in recent weeks.

The following day, he woke up with the 'death rattle' and passed less than 24 hours later.  You just never know.

Your DH may be weeks away, days away, months away, hours away.  Some times it is real obvious when death is imminent.  Other times we get surprised a bit.

Gentle, gentle hugs to you as you travel this last stretch.  This isn't easy.

soft hugs,  Cynthia


irisized
Posted: Saturday, July 2, 2016 9:57 AM
Joined: 10/4/2015
Posts: 440


Cynthia, thank you so much. I guess I need to understand the many ways our loved ones go through this transition.

hugs, kathy


Nanateach
Posted: Saturday, July 2, 2016 8:07 PM
Joined: 12/2/2014
Posts: 121


My husband probably weighed around 145 when he died.  His normal weight was 220.  He was bedridden the last 5 months of his life; however, he had been eating quite well.  I had to feed him and he was basically nonverbal, but he was still eating.  A week before he died he began to "pocket" food, that is he had forgotten how to chew and would have food in the sides or roof of his mouth.  I had to begin to puree his food.  I did that for two days; however, he would only take a few bites and fall asleep.  Then, about 2-3 days after that, he would not drink.  He had hospice and had begun to have morphine.  The nurse told me his body was shutting down and it was his way of telling me that he did not need anymore food or drink.  He died two days later, very peacefully.  Everyone is different.  Jim did really decline extremely quickly that last week.  Prayers to you as you endure this sad stage.
acb10
Posted: Saturday, July 2, 2016 8:35 PM
Joined: 5/31/2014
Posts: 124


Hello Kathy,  We've all been there so I hope some of our words will help you.  My mother had terminal restlessness and agitation for weeks.  It was so bad I really couldn't vouch for her safety even though I was with her.  At night she had such compulsive behaviors trying to get out of bed and a couple of times when I tried to put her back into bed she didn't step up enough and slumped to the floor making it impossible for me to lift her up.   I was sleep deprived and finally was able to find her a bed in a nursing facility at the beginning of March so that she could have care 24 hours a day with skilled professionals.  Nursing staff was great but the agitation really was a nightmare.  I had to have volunteers from church go to the facility to sit with my mother so that she wouldn't get up out of the chair or bed.  She was like the energizer bunny - just kept going and going and going.  I went there every night and when I would leave, the nursing staff would keep mum up at the nursing station all night so they could keep an eye on her. At the end of being there a month, on a Thursday night I noticed she was having some pain I think as she was groaning and nurse upped her morphine a little.  Friday night our caregivers (that I also sent there to help) said she ate well.  Saturday morning, I received a call saying they felt mum changed over night.  By Saturday afternoon hospice told me kidneys seemed to have shut down and that she was in the final stage of dying.  I was with her all night at the facility holding her hand and telling her I loved her and at 7:45 am she was gone.  Of course, I expected her to die at some point but certainly not that week and not just only after being in the facility for a month.  I had just met with the care staff a few days before to go over our care plan.  So, bottom line, as everything with this disease, sometimes we just can't tell when the end is coming until it really is.

Please know that we are all thinking of you as you go through this.

april


irisized
Posted: Sunday, July 3, 2016 8:00 AM
Joined: 10/4/2015
Posts: 440


Nanateach and april, thank you for sharing your stories...they help me understand each persons path and what I may see... I know it is hard for you to relive those days...so I really appreciate your sharing with me. I guess we are there...the hospice dr ordered double doses of Haldol because he was yelling at night....first night he only got up once....last night was horrible...he was up yelling every 1/2 hour....and now he is sleeping soundly.... no breakfast...and on top...I forgot to do his night time insulin...so his blood sugar was high.... he has been a diabetic for over 30 yrs and he asked what I was doing....told me the needle hurt....and last night yelled he was in pain....this morning he doesn't know what to do with his feet....this has been on and off for a week....yesterday afternoon....I looked at him and he had tears coming down his face and said he was tired, I thought he meant he wanted to go to bed....he said no...just tired of trying to figure out why he cant talk and do things...he said just tired.... I told him when I am sad I talk to my mom (who passed away 12 years ago) , I said talk with grandma and grandpa (they were a big part of his life) that they would help him....and to talk with God , that he would guide him....and then I said I would always care for him and love him.....he then wanted to take a nap...I guess the next few days, weeks or months will go up and down....

Cant thank you enough for replying

Hugs, kathy


Ukie
Posted: Sunday, July 3, 2016 9:00 AM
Joined: 12/16/2013
Posts: 352


Kathy,

Be prepared for a roller coaster ride. Your DH will have ups and downs and you will have emotional ups and downs. My Kathy progressed quickly. All in the matter of one week I went from MC facility (which would not accept Kathy because she needed too much help), to MC facility with physical therapy, to hospice care to her passing. I feel fortunate because Kathy knew me to the very end and the hospital she was at was fantastic. I wish I could offer more but just cherish the time you have together. God bless!


irisized
Posted: Sunday, July 3, 2016 9:16 AM
Joined: 10/4/2015
Posts: 440


Thanks Ukie, That is the saddest part to me...that he doesn't know me....today he called me mom....his aide said she cannot believe the decline is so fast in the last week.... but I was luckier than some couples...I had 37 years....we didn't have an easy life, but we sure loved each other....A LOT....

hugs, kathy


Ukie
Posted: Sunday, July 3, 2016 10:41 AM
Joined: 12/16/2013
Posts: 352


Kathy,

I think that as much as we try to prepare ourselves for the final stage it is never enough. I'm a practicing Catholic so I did have a priest come and do the Anointing of the Sick and give Kathy communion. The nurse at the hospital had asked me if I had made any arrangements yet. I told her that I had not. She suggested that I do so. I followed her suggestion and I went with our son and daughter to the funeral home and made all the necessary arrangements including picking out the plot at the cemetery the next day. I found it helpful ( not exactly the right word I want to use but best I can think of for now) having that already taken care of. So sorry that your DH doesn't recognize you but remember my story about the "big one", Kathy remembered the big kiss! We never know. The same nurse also told me to talk to Kathy because hearing is the last thing to go. Our children and I each had our private time with Kathy before she passed. Stay strong!


His Daughter
Posted: Sunday, July 3, 2016 11:59 AM
Joined: 6/25/2014
Posts: 2270


Kathy,

There was nothing more difficult than the final stage of this process.  For my dad, it was over a year completely bed bound.  Each month he lost more and more strength, his words and his minimal abilities.  By the time it was over, I was privately begging for his death.  I just didn't want him to have to endure this any more.

I know how difficult this is.  We all do.  And I wish there was some way to tell you exactly how this will end.  And even those who deal with this all the time, can't really predict how death will occur.  It is so individual.  My dad was mottled from his abdomen all the way down his legs one morning.  All the books and experts said that generally meant that the person's body was shutting down, and would die within 24 hours.  NOPE, not my dad.  The mottling went away, and he continued for over a week.  A hospice nurse said she'd only heard of that one other time in her 30 years of nursing.  

What I can wish for you, is the strength to get through this final stage, knowing you are doing everything you can with love and compassion. And that this is over for him quickly, without pain, with you sitting right by his side.  There isn't anything more he could ask for.   

God bless you for all your loving actions.  All of us here are holding you both in our thoughts.

   


irisized
Posted: Sunday, July 3, 2016 12:41 PM
Joined: 10/4/2015
Posts: 440


Ukie and his daughter....your words have helped me a lot....I got out for an hour today ...sis in law sat with him....he cried telling her he wanted to die.... I think now she realizes where we are in this.... for a long time it was denial.... she said it sounded like he had allergies...because he was so congested..... I tried to explain it to her.... and she broke down.... I have decided to check into funeral homes....I was reading the hospice book...and as much as it feels a little premature...I would rather do it now...than when the time comes....panic..... not sure if I would have my sanity without this group.... words cannot really how much I need this group now...

hugs, kathy


jfkoc
Posted: Sunday, July 3, 2016 3:48 PM
Joined: 12/4/2011
Posts: 19550


At 2p.m. the hospice nurse came and was elated that Dick's lungs were clear. At 5:30 the caregiver told me to call them...there had been a big change. At 3:15a.m he faded out. 

What can you plan on? You do know that your husband is very ill and has probably a finite number of days left to live. My only suggestion is to make as many minutes as you can good. Be close. Let everything else go. 

No body likes any of this but do your best with what you know to be real and do come here with your questions and feelings. I know we will try our very hardest to support you.


irisized
Posted: Monday, July 4, 2016 7:22 AM
Joined: 10/4/2015
Posts: 440


jfkoc, pauls congested so much of the day. He cant seem to cough anything up. The nurse has not been here is 2 weeks which makes me mad. He is down to eating maybe 3 bites of food... sleeps all day, they increased his Haldol at night (cant rmbr if I am repeating this) because he was yelling all night....now he yells miss, I need to go to bed...when he is already in bed.... I try to sit him in the recliner in the morning to help with congestion....but he still is trying to cough.... I have so many questions...wish the nurse had come...do I continue the seizure meds, his insulin has been sporatic....because he is sleeping so much.... do I stop that.... his blood sugars are all over the place....I am trying to do the best I can....but getting tired and confused as to what is the right thing to do in letting him go...

thank you for helping me

hugs, kathy


Agent 99
Posted: Monday, July 4, 2016 9:58 AM
Joined: 6/7/2013
Posts: 2166


Kathy,

Please call hospice now and demand that a nurse or doctor come over.  I know it's a holiday.  If you can't reach anyone or get what you need call the MD on call number.  Better yet, call the MD on call also.  My sweetie didn't have any meds that were absolutely needed so they were stopped after he almost choked to death when the nurse gave him his pills.  She was a young and new nurse and didn't do anything claiming he had a DNR.  My sweetie was in the hospital.  It was an absolutely terrifying moment for us.  He eventually cleared the pill but his body temperature and breathing became seriously unstable.  It took a day for him to stabilize.  He passed 3 days after that incident.

Having diabetes and not being able to administer your DHs necessary meds needs to be addressed by the hospice so DH and you don't experience extra stress during this very difficult time.  Both of you must go through this as peacefully as possible. 

Since you made the arrangements at the funeral home, please be sure to request at least 15 death certificates.  It is much easier and less expensive to have them at the time of DHs passing plus you will need them when handling estate matters.  I used to carry an CD image of my sweeties brain in my pocketbook,  Now I carry a copy the death certificate.  It;s amazing how many and who will ask for it.  When I cancelled his Costco membership I had to provide it!

Big bear e-hugs and holding your hand...


irisized
Posted: Monday, July 4, 2016 10:07 AM
Joined: 10/4/2015
Posts: 440


thank you, i have not found a funeral home yet....amazing the different prices for a simple cremation with no service. One place 775. the other 1900. i don't like doing this yet, but i guess from the advice of others better now.... thank you for the heads up on death certificates....who would even think Costco would want a copy....thank heavens for all of you

hugs, kathy


Agent 99
Posted: Monday, July 4, 2016 10:30 AM
Joined: 6/7/2013
Posts: 2166


I'm sorry.  I must have confused what another e-friend said.  I didn't make arrangements prior to my sweeties passing.  I just couldn't face it but my friend put me in touch with someone who used to own a funeral home.  I spoke with him about "the process" and he was very helpful. In fact, I told my friend that the man had such a great bedside manner that I was ready to have him come cart me away.   When my sweetie passed I called the funeral home that man used to run because it is still in the family.  I think that it cost just under $1000 for all the paperwork, cremation and urn.  I did not have a service or an obituary published.  Social security pays out a $255 funeral benefit.  Funeral homes are on call 24 hours a day - I didn't know that either.
irisized
Posted: Monday, July 4, 2016 11:32 AM
Joined: 10/4/2015
Posts: 440


agent 99 , you were right it was me that said I was looking into funeral homes, just didn't find one yet.... I didn't know social security helped...good to know...just talked with sis in law on the phone...she thinks he may get better....ugg...she sat with him for an hour yesterday and said things normal...he wants to stop his meds....dah....he has been a type 1 diabetic for 30 plus years.... that is not normal.... she felt that was a glimmer of reality because he knew he was a diabetic.... it is getting so tiring telling her...he will not get better....and yes at times they can be lucid....I hate that I am looking at funeral homes...but I am here alone....my family is up north......and as much as I love my sister in law....she gets me more upset talking like that....its hard enough dealing with this, to tell me he will get better.....God help me...

hugs


Agent 99
Posted: Monday, July 4, 2016 12:13 PM
Joined: 6/7/2013
Posts: 2166


I continue to harbor deep resentment towards friends and family who wouldn't validate my observations, knowledge that my sweetie was dying 4 months before he passed away.  With some family that's their MO - be contrary to everything I say but with some friends who were very supportive and helpful it is a bad taste that won't go away.  Often I feel internal rage about it.  I don't know if I ever will be able to let it go.


irisized
Posted: Monday, July 4, 2016 12:52 PM
Joined: 10/4/2015
Posts: 440


agent99....THANKYOU I feel the rage also....you saying it allows me to say it...I thought I was being mean or jealous because she is able to have a normal life, take trips, build a pool....uh oh....sounds like I need a shrink!

hugs, kathy


canuck
Posted: Friday, July 8, 2016 3:43 AM
Joined: 7/30/2015
Posts: 82


Kathy, my thoughts and prayers are with you. This is such a tough part of the journey. I posted this after Mom died, hoping it might help others (sorry hyperlink isn't working):

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147521293

Please remember, we're all here for you.


jfkoc
Posted: Friday, July 8, 2016 8:25 PM
Joined: 12/4/2011
Posts: 19550


Not everyone can face what we must. Come here...we will validate you. Re the anger? I think we all have that and truly not everyone has  a target. Be angry...rage. This is all something we do not want for our loved ones or ourselves.

Re funeral homes. I selected one that was especially thoughtful about veterans. Thye came and talked to me ahead of time. No Brillcream or shiney suit, They covered Dick with a flag supplied by veterns. It covered him during the creation minus the stars they cut out for me. When they said they would do one I asked if they could do 15. Absolutely. One for each child and one for the grandchildren he was close to. No, the others will not know. Our jewelry store ordered small wooden boxes to put them in.

They kept the ashes until I was ready to accept them..about two months later. They also said that they would make arrangement to take Dick to Arlington if I wished. So far I can not let him go. I did not have any service or memorial basically because I could not face an event and Dick was not religious. 

Find someone you are comfortable with and who you trust to arrive in the middle of the night and leave with your loved one.