Dying Guide: Why I Hate Hospice Care
93Die young and leave a beautiful corpse? Or hang in til you reach a ripe, old age so people can say, "He had a good life."? Clock out suddenly with no notice? Or wither away slowly over weeks, months or even years? There are pros and cons to each scenario. But one thing's for certain: we may not know when, where, or how, but we're all going to die.
My Role Models Have So Far Been Positive
Both of my parents are now dead. Mom (God bless her) died on my one year wedding anniversary in 2005. A lifelong smoker, she had COPD. That is what finally did her in. She was 2 months shy of her 81st birthday and said she was shocked to make it to 80.
Mom suffered with her lungs and related issues (swollen ankles) for years. But she wasn't "dying" per se. In the end, it was a mere 18 days from hospitalization to check out.
The way we knew it was serious was Dad carried a portfolio of important papers -- including her Do Not Rescusitate (DNR) with him at all times. He told us he and Mom had been having some serious discussions.
He was prepared. She was prepared. At the exact moment of her death my Dad was in church praying for God to take her.
Dad's Last Wishes Mostly Granted
My Dad outlived Mom by 3.5 years. He was hale and hearty up until September. Then he went downhill fast.
Prior to his final hospital stay he'd had quite a few others. As a result, he'd become quite a favorite of the hospital chaplain, a lovely red-headed woman named Suzanne (who, we speculated, might be an ex-nun). Suzanne seemed to always time her visits when I was there. I don't think either my brother or sister ever met her. But I had the pleasure of many prayer sessions with her.
I also had the opportunity to discuss death in a philosphical way with my dad. He had a strong faith and was not afraid to die. Why should he be? His life partner was waiting for him, as were his loving parents.
Weeks before he died, Dad spent a lot of time at his desk. He made sure all his affairs were in order. He did all the things they say happen to people preparing for the transition from body to spirit.
He stopped eating. He spent more and more time thinking/living in the past. He rejected medical help. We felt him pulling away from us little by little.
For me, because I knew his wishes, this was less painful than it was for my siblings. Of course I didn't want him to leave us. But I also knew the reason he was hanging around was not for himself. It was selfish to want to keep him around when his body was failing organ by organ.
In the end, Dad's final countdown was blessedly short as well. Back into the hospital on a Sunday. Moved to a rehab hospital* on Thursday. Taken to the ER the following Saturday, where he died early Sunday morning, surrounded by his family.
*A quick note about rehab hospitals. I am convinced there is only one way out of these facililties. And it's not standing up.
A Long Slow Death Sucks for Everyone
A mere two months after we buried my dad, it came time for my father-in-law. We put him under the care of the big "H." My FIL received what they call "palliative care" -- meaning intended to make the patient comfortable, not reverse a condition.
He was officially "in hospice."
According to the physician's order that hunh on his kitchen whiteboard, his terminal condition was"end-stage lymphoma." No one could or would give us an exact timeframe, but it was his doctor's idea to get hospice involved.
Typically that means the patient is expected to live less than 6 months. However, it's possible fo hospice to go much longer. I have heard of patients being on hospice for 4 years. I have heard of patients being on hospice, then having a resurgence and being "kicked off" hospice. Actually, that doesn't sound bad, does it?
In my father-in-law's case the family owed to not allow him to go into the hospital. No matter what. His last hospitalization (surgery on the lymphoma -- before two rounds of chemo and radiation) was a disaster. He tore at his IVs and yelled for his shoes, over and over and over and over and over.
You see, my father-in-law also suffered from Alzheimers. This is sort of a double whammy medically, but in a way, also a blessing. He did not seem to understand what was happening, either within his body or around him. Due to his Alzheimers, expressed his his pain and symptoms verbally at the level of a three year old.
How to tell when Death is nearing
- Dying: A Guide to Crossing Death's Doorstep
This hub offers a breath-by-breath-to-last-breath guide to help you recognize and participate in each stage of your loved one's last weeks, days, hours and minutes of life. Like fingerprints, each person's exit from this earth is unique and highly...
Watching the Signs Approach
Each day he withdew a little more from life. He started spending more time in bed. He lost the ability to eat solid food because the lymphoma closed up his esophagus. As a result, he lost at least 25 lbs. This was not 25 lbs. my lean, lanky FIL could afford to lose.
Meanwhile, all we could do was sit by and watch helplessly as he slipped away day by day, pound by pound. Itellectually, knew and accepted that he wouldn't be getting better. We did our homework and read up on the dying experience. We were well (keenly) aware of the subtle changes and what they mean.
The hospice nurses came once a day to do a quick checkup. About the only comfort they offered (us) was to up his dose of morphine when he was having breakthrough pain. At the end he was on enough morphine and Fentanyl (delivered via patch) to kill a horse.
I Don't Know How To Let Go
- Hospice
Hospice Services, Make a Donation, Find a Local Hospice, Frequently Asked Questions, The Hospice Concept, What Questions Should I Ask About Hospice Care.
Hospice Take II -- The Final Parent
I originally wrote this hub in 2009 when my FIL went through hospice. It is now 2012 and I am updating it with our latest hospice experience. It is familiar, but this time quite different.
This time it is my mother-in-law (MIL) who is under hospice care. She outlived her husband by 3 years and is now 90.5. Here is what has transpired with her and how/when we knew it was time to bring in the "H" team.
- Hospice Foundation of America
Hospice Foundation of America is a not-for-profit organization that provides leadership in the development and application of hospice and its philosophy of care. Through programs of professional development, research, public education and information
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Hospice as Legal Protection
This may sound bizarre to you. If we hadn't lived through the last 3 years and a horrendous legal battle for my MIL's right to die in her own home, with dignity, it would sound strange to me, too. But it makes perfect sense, considering.
We put my mother-in-law in hospice to protect ourselves. Of course you can't just enter hospice without a valid medical reason. A doctor needs to sign off that the person's lifespan is medically limited. In this case, medical necessity and legal necessity coincided.
My MIL had been strong and spirited (and stubborn). On Christmas Eve she was here opening gifts and singing carols. She showed no signs of imminent death. But something changed. The change was subtle at first, then undeniable.
By mid-February she looked different. She started exhibiting the classic withdrawal symptoms. She napped morning and afternoon. When up, she was in respiratory distress. Her confusion (dementia but not Alzheimers), increased.
Simultaneously, we were in a legal battle trying to keep her out of a nursing home. I won't get into the details of that crazy story here. If you are interested, read some of my other hubs.
Putting my MIL under official hospice care put all of "them" on notice that we have no intention of "placing" her anywhere. She is not to be moved. She will stay right where she is and die in her own home, preferably her own bed.
As to hospice itself, we are working with a different provider this time. Their care is more full-service and less focused solely on palliative care. Here are some of the services hospice has provided for us this time around:
1. Pain medication. Ttwo levels of pain control. As time has passed we have moved from Vicodin to liquid morphine.
2. Emergency medicine kit.They want us to be medically prepared for any emergency. If MIL starts exhibiting new symptoms in the midde of the night, we will be ready. So far we have used the Haldol (there for agitation) but not (yet) the meds for seizures, congestion (gurgly, rattly chest) or suppository for spiking temperature. I say these are yets, because each day brings significant changes.
3. A commode. MIL does not like it next to her bed, but it is now over her toilet. The raised platform and arms make it really helpful as her motor functions decline and she needs help getting onto and off the commode.
4. A bright neon pink sign that is for ETs. In the event that someone should come to the house and not be dialed into the "we don't call 911 we call Hospice instead" plan, this sign alerts the emergency personnel that she is NOT to be taken to the hospital under ANY circumstances. We have been assured by the H nurses that no matter what happens -- even if she falls (the biggest fear for all old people) our hospice team has it handled. Ok. We believe them!
5. Other items they plan to provide but have not yet: Oxygen, disabled parking plackard, gloves for our 24-hour caregivers to use, adult diapers.
5. Forms to apply for reduced rates on her utilities. (electric and gas = two different utility companies where we live). I've been told it can take 2-3 billing cycles for the discount to kick in. Something tells me MIL will kick the bucket before that occurs, but it's a nice gesture.
Final Comments on Hospice
Living with terminal illness is like living under a boulder. There's a steady, crushing ache that only death can abate. At the same time, the family is also suffering from the terminal illness. We are painfully aware that we should be feeling grateful for each day we still have our loved one here with us.
We don't want to rush things by getting ahead of ourselves. The signals that death is approaching are not universal or tightly scheduled. They are guidelines only.
Everyone handles the transition in their own way, in their own time.
The hospice workers are there as much for the family as for the patient. They know what's coming -- as do we. But they cannot say when it will occur. They are not omnicient -- nor are we.
Hospice is truly a family condition. We all have one foot in life, but one foot already in the funeral planning, if not the grave.
Having been through this parents dying gig three times, I feel like I'm pretty in tune with what's happening here. As stated earlier, intellectually I know what's happening. Spiritually, I pray for acceptance of God's will. He will take MIL when He is ready and she is ready. And not a minute before.
Yes, it's painful watching someone become trapped inside their elderly, failing body. It is a very helpless feeling. I know I can't stop it. But on some very infantile level, I think I expect the hospice team to something -- anything -- to make it better.
Of course, they cannot. It's not their fault. But they do make a convenient scapegoat for all the negative feelings impending death brings up.
So that's why I hate hospice.
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MM, I'm very sorry to hear about your dad, your mom too, but I am comforted by the way they parted. My dad went the way your father-in-law is going, and I can only nod emphatically to everything you say about these final stages. That "steady, crushing ache that only death can abate" goes both for the terminally ill person and for the loved ones. I shudder to think back at those days when my dad was that way. I swear, I wish it to no figging one in the world, worst enemies included.
Thanks for sharing this, hugs your way.
(why isn't there a comfort icon like a hug, instead of that stoopid smiley face?)
--*H*--
Your story reminds me of that song, "He Was Walking Her Home".
Thanks guys (that's all 3 of you, GT, Elena and Teresa). I finally got the final capsules in. Now there's a video and a photo. I do appreciate your support. This isn't a very romantic offering for Valentine's Day. But it's MY Valentine's Day. We're on our way over to in-laws to bring them some candy. Well, my MIL. FIL can only drink liquids. I'm actually grateful to be able to participate in his final weeks/days. I will say, the support of HP is incredible. Couldn't do it without you and hugs and smiley faces:-). Thanks again! MM
Big hugs to you MM. Thanks for sharing your story. It's never easy.
I really have no words, other than to offer my prayers and support. I cannot even imagine the difficulty you and your family are going through, or the pain of your father in law.
It could only be hard writing this down and sharing it. So with all the hubbers who have posted before me, I say this calls for a group hug!
You poor love - and your husband, as well.
(((((((( MM)))))))) here's my hug dear. I know what you are going through. Been ther with my mom and father-in-law, aunt Irene and it is tough. love dear
Many thanks, dear Hubber friends. It's particularly warming to get hugs from the "tough guys" in the crowd (you know who you are). But just knowing there are sympathetic friends around the world is amazingly comforting. Thank you all again. Probably time to get back to usual: sarcasm with a dash of sauciness tossed in for good measure:-)!
MM, I feel for you. I know the mourning process can be very difficult.
Times like this are hard. I was just fifteen and I had to watch my mother for a year, die of cancer. In the 70's, in a small town, she was confined to a hospital bed for the last 3 months shot full of morphine for the pain. Death was a relief, that it was finally over.
As for my, dad he was smoke and got emphysema, so he had to take blood thinners. He kept having blood vessels rupturing in his brain. He lived to be almost 80, and I had moved away because of work, and could only visit once or twice a year. He finally had a major stroke and died. Which was a final relieve too, because we all knew it was going to happen.
But we still miss them and wish we could see them, I have enough faith in my Lord Jesus Christ and My Heaven Father, to know that life continues, and that death is just another step in our eternal life. I know this does helps to comfort some, but the emptyness cannot ever be filled.
Take care.
Keep on Hubbing.
I was touched by this story of your dad and I can see you loved him very much. These type of stories are sad, but in a way also happy too because it shows he lived a full life and was aware of his duties before dying. Great hub.
This is such a touching story. I am sorry for the losses in your family. My family had a much different experience with hospice care. My grandfather had melanoma. He went through treatment, and seemed to be doing better, but then, took a turn for the worst. Hospice care was an excellent choice. He didn't want to die in a hospital, where restrictions were put on family and friends visiting. He was surrounded by his family at the end. He died the way he wanted to, and it was thanks to the hospice care he recieved. The nurses that came were wonderful, and caring. I am sorry that your experience was so terrible.
My experience with hospice is still occurring. I can't really fault the nurses. They're doing their job. And hospice is enabling my father-in-law to stay at home. That's important to my mother-in-law and certainly would be to him, also -- if he had any clue about where he is. We just know that a hospital setting would be torturous for him. He does not do well in a hospital setting (who does).
Sorry to hear about the passing of your grandfather, Anna Marie. Sounds like his passing was as smooth as could be expected. That's what we're hoping for, too. Soon, I am sure. Every day is precious!
It sounds like you are a wonderful and supportive daughter-in-law. I'm sorry for your struggles.
This outpouring of love and support is just one reason why I love this community. Peace be with you, you are in my prayers.
A very raw hub indeed.
I share the compassion as the others here and in letting go. My 83 yr old father was recently plotting where he will be put to rest. Although he had a top-notch gravesite already paid in full, he changed his mind over the last few weeks and chose to be buried on the military grounds.
Im really proud of my father because the war was what his entire life was about.
This read says that you are proud of your parents as well.
Hi Newsworthy. Indeed, it's a good thing to feel proud of our parents. Their generation -- military service, rationing at home, everything -- molded them into fine specimens.
I am very proud of both of my parents and of my in-laws. Too bad we don't appreciate them this much when we (and they) are younger! Thanks for stopping by.
My grandpa took hospice too. Now he can't talk. I am sorry for your losses.
I'm sorry for your impending loss, Erin. It's part of life,but still hard to lose our loved ones. Good luck and I hope your Grandpa doesn't suffer. MM
I was going through your hubs and re-capping what you have experienced in your life. Hospice to me was constant sedation with mom and sometimes I ask did they give to much medication? Your strength to get through all of your pain has given me strength and courage from one writer to another to actually get on HP and begin to interract. Mom would not wish for me to stop doing what I love to do best. Thank you for your support and another great hub. I can't find the one you asked me to read and I hope you can send the link to me again.
Hey Julianna,
It is soooo good to see you on HP tonight!
The hub I was referencing earlier (much) outlines physical signs that your loved one is getting ready to pass. The one thing that I recognized in hindsight with my mom was the "burst of energy" about 3 days before she died. I'm thinking with your mom that was the day she ate 90% of her lunch.
FYI, my sister, also a nurse, was afraid of the same things with my dad. With a cancer patient there is no such thing as "too much medication" don't you agree?
Much love. I will hope to see you on the forums! MM
I was reading your story and feeling so heartbroken about your experience with Hospice, I work with an amazing staff of people that are very great at what they do when it comes to our Hospice Patients. One of our nurses has over 9 years experience focused on Pain Management and the latest and most efficient meds. Anyways, I am just letting you know we are here and understand what you are going through and if you have any questions or want to talk we also have a wonderful Social Worker that would be willing to lsten. Please call us if you need anything (208) 639-1122.
Thank you, Shannan.
It wasn't the hospice workers that were the problem. It was the acknowledgment that having hospice in our lives meant there was no hope. There was only 1 way out for m father-in-law. Well, of course there's only 1 way out for all of us.
Ironically, today is the 2nd anniversary of my dad's death. Given the choice, I would prefer the quick way my dad went to a lingering, painful decline from cancer any day.
But God bless you for what you do. MM
Glad found you, MM. Signed Teylina (error), not Teylin, put a tiny squelch on my hope of being me. Hope circles and slices life and death--tiny or huge. Hope drives us. Hospice came in for my fighting-spirited, alert, radically-treated brother. His wife needed them; I think he gave up--lost hope. They do great work. Hospice employees often suffer extreme hours, stress, burnout. A close friend with Hospice help found that, as with all groups, there's questionable (if not bad) in the good. Views on death vary, but I find your comment that they took away your hope the most telling. Often that 4-letter word is the best in the world. I hope it's never taken away from me. Hope I can get my name right. Hope the need never arises to use hospice in desperation; hope have the guts/ability to cope without--no hope means let me deal w/it if I can. Glad I found this even after two years. You said it perfectly. Truly sorry for all you've gone through (probably still as the center of the sandwich). Thank you.
Hey there Teylina, Thank you for your heartfelt comment. I wrote this hub while still very emotional about my father-in-law's death. It was painful to watch.
I think I have come to terms with the fact that when you bring in hospice that is the acceptance of imminent death. Ironically,the word "hope" is contained in the word "hospice." I think perhaps the hope in hospice is for a peaceful, pain-free death....
Anyway, glad to have your thoughts. MM
My sister is in "Hospice" presently, She had a stroke last June, and has been tube fed ever since. A few times, she aspirated from the tube feeding, and had to be hospitalized. . .Because it developed into pnuemonia. Each time she recovered and came home. This last time she was snrt to a "Hospice " instead. They pulled the plug on her ventilator 9 days ago, and her vitals are still good, considering that they took her feeding tube away several days ago, and the only thing she gets id Morphine, and "Tylenol" (that is a laugh!)
I am "Livid" I know my sister, with the proper care and Re-hab would continue, and perhaps improve. Now, I watch her fading away daily, from no water or nutrition! God is the one who gives life, and it is God that takes it away. . .Not man, nor doctor. The best part is she NEVER had a pain pill or any meds needed since her stroke in June 2010 . . .I aks why the 'Morphine" they say for pain, yet. . .she has no pain! BIU, i know she will. . .When her body starts consuming itself. God Have Mercy!!!!
Dear Judie K,
I am so sorry to hear of your sister's situation. Mostly, I am distressed by the obvious frustration and anger you are feeling about her treatment. It's hard enough watching a loved one suffer and fade away. But to feel like the decision to end life support is wrong must be unbearable!
In these situations our faith in God is the only thing that keeps us sane. I know God is there for you and will not allow your sister to suffer.
I do hope you are able to make peace with this -- eventually. God bless. MM
I just googled I Hate Hospice because I was having another angry moment about my experience. My experience was beyond awful from the day we rolled in up to now with my post-death "support". Hospice is the Mc Donald's of death.
Hello amy cavanaugh. I am so sorry to hear of your experience. Not surprised, particularly. But saddened. Because at this most vulnerable time we need PROFESSIONALS to guide us through. I think perhaps because it's provided free that there is no real quality control.
We had one "good" hospice nurse and one "bad" hospice nurse. And as you say, the post-death "support" is worth nothing. Better to get support from grief groups or a grief counselor (they really can work).
I'm sorry for your loss and also sorry for your compounded pain.
Wishing you many, many, many happy and healthy years until you have to interface with any kind of end-of-life personnel.
God bless. MM
I have witnessed firsthand how unscrupulous hospice can be. We have a friend that was put on hospice months ago. She was doing fine as far as vitals, she actually wasn't even ready for hospice. The fact that hospice accepted this assignement is unethical and illegal. The SAME DAY that her family decided to take her off hospice, a few hours later, she's dead. Why??? Because the hospice nurse overdosed her on morphine and who knows what else. Remember, just a few hours before, she was responsive and vitals signs normal. This is a very common practice in hospice and I hope that there are regulations put in place to further prevent this illegal practice of expediting a patients death. It's all about the money. Hospice doesn't want to spend too much time with one patient. Why not let the patient die when they are ready. It's one thing to medicate for pain, it's another to put a patient in a coma and shut down their breathing. Disgusting!!
Wow. I'm dumbfounded at your post, Anonymous. Don't not believe you -- not for a minute. That sounds horrible, especially for the family.
Now I have more reasons to hate hospice.
Thanks for opening our eyes.
MM
I have read some of these post and it makes me scared. I just signed my aunt up for hospice, it hasn't been a month yet. So far I have not had those experiences and I hope I don't. My aunt is 99 with CHF and kidney failure. what I have noticed is her sleeping all day and night, i am feeding her liquids now with a syringe and I have to hold her head up to feed her. She has Parkinson's and dementia. At this stage i feel very helpless. She also sits and lays to the right, she no longer stands, and helps me. She doesn't want to die in a nursing home nor a hospital. The hospice has been a great resource for me in aiding me in taking care of her. I feel sorry for your experience with them. I am sure there are good hospice care providers.
Hello Niece,
Good for you for caring for your aunt. Sounds like you have your hands really full. It's nice to be able to fulfill a loved one's wishes to live at home till the end. It's a blessing to be able to die on our own terms.
Hospice is hard because it's an admission that the end is near. It's a blessing in some ways, but also a long, drawn out process watching someone slip away.
It's not hospice the institution I hate it's the idea of hospice. But I will say the workers who tended to my father-in-law were not what I would call angels of mercy.
What you are doing for your aunt makes YOU an angel of mercy.
Good luck with her final months, weeks, days.
Sending you blessings and strength. MM
"...we are all going to die". So true. Thanks for sharing your experiences. Gavin
Dear Neice, I have had wonderful experiences with Hospice with both my parents. When we brought hospice in mom was very uncomfortable and they made her more comfortable. They also arranged for a preist to come and speak with her, she also had a nun come from Hospice to talk and sing to her. We are of the Catholic Faith. They will ask you of what faith you are. Hospice is more than just meds. They offer aides to go shopping for your aunts needs. Sometimes they will just sit with the patient so you can have a break. The biggest part of hospice is so that you treat the patient at home and do not put them through test, life support, etc, when they are obviously dying. We used some services with my dad and different services that hospice offered for my mom. Pick and choose what best fits your need. When your loved one is in pain and aggitated hospice will give them what they need. My parents told us that they wanted to be comfortable. They were ready to die and had accepted it but they wanted to be comfortable till it happened. And that is what Hospice did. Neice and Mighty Mom I will keep you in my prayers and hope you have a good experience with Hospice as I did.
hey there oldersister -- wise and wonderful hubber friend!
You raise some excellent and important points about hospice and the diversity of services available.
They are really set up to offer the FAMILY respite in a number of ways. Yes, keeping the dying person comfortable is key. But giving the family time off to just breathe for a few hours, or do things family is not comfortable doing -- like bathing the patient -- also key.
We are currently in hospice with my mother-in-law. It's funny you should mention the spiritual support. That was HUGE for my parents. Also Catholic. I have fond memories of praying and taking communion with my dad and the hospital chaplain. That was important to him.
I asked my MIL just yesterday if she would like to have a pastor come and pray with her or do communion. She said no. So everyone is different.
Picking and choosing what works is key. Otherwise you can easily get overwhelmed with too many people. It's up to the family to say, "We don't need that today, but maybe next week..." It's very fluid and needs can and do change.
The one thing I can for sure say about hospice is they understand the dying process. They can be helpful in understanding the signs you are seeing -- if you are ready to hear the truth. And there's an art to "not saying" things to alarm the family, too.
It's not an easy time, for sure.
Thanks again for your perspective on this, oldersister!
MM
Any time Mighty Mom and just know that you are a great daughter in law.
I lost my Dad last April 2011 Mom was on hospice as well but was living in the apt until Jan at which time I had to move her in with me shortly after she moved in hospice put her on antidepressants and over medicated her and we think she had a another stroke because now she will not leave her room or get in her wheel chair hospice provides and aide for 1 hr who comes form 8-9 am I am the oldest daughter of 5 one has passed one is in jail one comes sometimes and the other has seen mom 3 times since dad passed Untill the over medication I was able to leave the house for a while but now I am as confined to the house as she is Noone will help not hospice not my family I promised my Dad and her I would not put her in a nursing home but I am reconcidering I have to skype my grandkids and they live 13 miles away anyway I am not a fan of hospice when I saw this I just felt like telling you you are not alone
Thanks, bobbie. Sorry to hear of all your losses. My sympathy on the loss of your dad. The one-year anniversary is very hard. It gets easier.
You raise an interesting point about hospice and medications. If you feel your mom is being overmedicated can you tell them you want to back off? Who is administering the meds -- the hospice worker or you, or a combo? My FIL was on a list of meds in hospice as long as my arm. I wonder how he was able to get up at all! We have fewer but potent pain meds for MIL. Until this week we used them sparingly (as needed). She can no longer verbalize her pain and our goal now is just to keep her COMFORTABLE.
You mention the hospice AIDE coming once a day. Can you ask for more volunteer help so you can get out? Of course I don't know where you live. Here, there are a ton of hospice volunteers just looking to be useful.
Also, how often does the hospice NURSE come and evaluate your mom's condition, including her meds level. That should be at least every two weeks or weekly. They will come out more if you need.
I hear the frustration and disappointment in your post about your siblings. We simply don't know until we are put in the situation who will step to the plate and who will run to the hills. Sometimes we need to be direct and TELL people we need more support.
You've been through your dad's death and you are watching your mom decline. You will not get a straight answer from hospice. As noted in my hub above, I was told to plan for 3-4 more months and then told my MIL was about to be "kicked off" hospice. If my MIL lasts another week I will be very surprised. She has been changing rapidly week to week. And like your mom, I know she has had a series of strokes. She has not wanted to get out of bed (except to eat -- but sometimes meals in bed) for weeks. It's possible what you are witnessing is your mom withdrawing from the world. she may be signaling that she's transitioning.
I don't want to presume that you either do or don't know the signposts of impending death. They are not a secret.
See my hub "Crossing Death's Doorstep" which I hope will help you decide what's going on with your mom.
Hang in there. I know exactly how impossible this situation is for you and give you huge props for taking it on solo.
Wishing you all the best.
MM
P.S. This may sound weird, but this time with your mom is the most precious gift you can give her and you will look back on this period in your life later and feel really good that you got to be there. Hard to imagine now, I know...
Thankyou I will read your husbands notes I didn't think about the transitioning. I just asumed it was from the stroke we have a nurse that comes once a week but I have asked for more help and they said they just don't have the volunteers there are 3 brothers 6 grandchildren and 12 or 13 great grand children , I can count on one hand the family that does come to see her or offer to help at least I know I have done and will continueing doing my part and keeping my dad's wishes thankyou for letting me vent on here you will never know what a help it has been I wish you and your family all the best
Hi again,
Vent away. That's what I write hubs for -- to vent. It's amazed me to find others who have the same issues in their lives (of course I assume I'm unique).
You said something very important -- that you are keeping your father's wishes. I can so relate to that. My FIL's last words to his son were "take care of Della." That request has cost my husband and me dearly. We had to uphold those wishes against my husband's sister, who "felt otherwise" (don't even ask). We faced her down legally and got her off the trust. But then we had a 2.5 year battle with the paid fiduciary put in her place. In the end, the SIL and the fiduciary just wanted to put Della in a home. That was NOT her wishes nor her husband's. It has been a long, difficult road for us.
But we stand by our actions. We can hold our heads up knowing we kept our promise to let her live out the remainder of her days in her own home.
I don't know what your financial situation is, but I highly recommend getting a PAID caregiver in at least part-time. It sounds like caring for your mom is overwhelming. It's hard physical work, on top of the emotional drain of seeing her not thriving.
We have plenty of family who live nearby. We wouldn't even think of asking them for help-- it would be more trouble than it's worth.
But, if you think your family could be helpful but simply aren't aware of how bad things have gotten, by all means put out an SOS and see what kind of relief you can round up. As I said, in the end, it's probably a lot simpler and more reliable to HIRE a caregiver.
Ours are Tongan/Samoan and we've also had good experience with Fijians. Not being racist here -- certain cultures revere the elderly and caregiving is a natural and honorable profession. Ours have become our substitute family -- since we've lost the biological family to the lies and deceit of my sister-in-law.
Gook luck to you. Whatever decision you make will be the right one, if it's from your heart.
P.S. Try to get your mother's MD to come out to see her. That level of expertise has given us comfort when we KNEW the hospice nurse was full of shit!
MM, It sounds like you are an amazing strength to your family. I have issues with our health care system (especially hospitals) when it comes to the elderly. My stepfather was hospitalized in 2005. He had a brain tumor, prostate cancer and was recovering well UNTIL a hospitalization which concluded with him getting MERCER. He couldn't move, was put on a trach, then a stomach tube. Hospice showed up and said he "qualified". My mom fought hard for him that entire year. She brought him home, set up a hospital room and learned how to clean his trach and tube feed him. After she supplemented him with everything healthy she could find to pour down his tube...through love...and our prayers...he got better! His doctors were shocked and thought he shouldn't be alive!! And to think we could have sent him away to die. (not that in your case your family wasn't ready) but sometimes I think the elderly are just written off....and it's sad. Sorry for the lengthy dissertation. I was greatly moved by your hub and your care.
Hello dagny roth. Thank you for your uplifting story. I've learned a lot about so many things through seeing 3 parents die and one now in hospice. I agree, we as a culture have lost respect for the elderly. Starting with families who pretend it's better for Mommy or Daddy to be in a place there they are "stimulated" and have other people their own age around them. Not always. And it's usually for the convenience of the kids who want to live their own lives.
Don't get me started on the HC system. I had a girlfriend go in for a torn meniscus and spend 8 months fighting a raging infection that almost killed her. My son almost died as they performed a series of CYA tests and passed him around like a hot potato, finally giving up and sending him to Chronic Pain and loading him up on morphine, Norco and Valium. He is 19. Happy to say his story has a similar happy ending to your stepfather's. He took HIMSELF off all the pharma crap and turned to natural healing and spirituality. I'm a big fan of alternative medicine now. I set foot in doctor's offices as infrequently as possible.
I appreciate your comments. Doing the right thing isn't the easy thing. But when all is said and done, I will know I can hold my head up with dignity and grace.
Bless you for sharing. MM
goldentoad 3 years ago
I wish I didn't have to use any words right now and just give you a hug.