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My husband has vascular dementia, incontenance both ways, Foley catheter, and other health issues. Has had numerous UTI’s 2x with sepsis, that have taken significant decline with each episode. This last recent hospitalization he now is in a hospital bed unable to stand to transfer to a wheelchair. His loss of muscular mass is now evident. It is heartbreaking to see him in bed 24/7 not sit with him in our family room where we watch his favorite movies, music, activity of my daily chores, talking, dozing, asking him questions. His declines is mostly physical, he eats well, he knows us, his surroundings and many of his favorite tv shows, although he doesn’t comprehend everything, his thinking skills are not good. His attitude is good, never complains, anyone who calls he tells them he’s having a good day. Thank God, but for the first time the other day, he seemed troubled and I asked him what was wrong, he didn’t seem to want to answer but finally said, this is not good, I need some good news, improvement. It broke my heart. It’s so cruel, the hyper, trivia buff, phys Ed teacher, coach, athlete. I just tried to assure him we’d try to get him up out of bed, but I can’t and my son tried, it was so scary, he is dead weight I thought they both would go down. It lasted an hour in the wheelchair and by the time we got him back in bed he’d had a bowel accident.


I am now able to get hospice for him and as much as I know I need the help and know he’s not going to get better, I’m having a difficult time accepting this decision, crying at a drop of the hat because I’m now faced with the outcome. I’m not ready to lose him, give up on him, I’ve cared and worked so hard these past couple of years to do everything I can to fight this but I’m feeling I can’t fight for him any longer and it is God’s will. Help me Lord💧

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Would it help any if you had a Hoyer lift or a similar device so that you could safely move him from the bed to a chair? He can qualify for that under Medicare if he is bedridden. Not sure what, if any, effect that being on Hospice may create.
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Just experienced this a few months ago - 95 yo mother was placed on hospice. Although she 'knew' she was on hospice - she made the decision to go on it - when she talked about the future, it was always outside the parameters of hospice. With that attitude, I was told that it was possible she could be on hospice for years, perhaps even rally. So, going on hospice isn't always the ending. However, I DID find that hospice care was many degrees better care for her - once the right hospice place was found. Just because a place says they provide hospice care, doesn't always equate to the care actually happening...especially when you are not present. Making that choice is critical for the outcome and care.
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Pitchbb...I forgot to add this in my post.
Keep in mind there are no timelines...
My Husband was on Hospice for just over 3 years.
I would not have been able to keep him at home and care for him the way I was able to if it had not been for the Equipment, Supplies, Support and help that I got from the dedicated people from Hospice. From the Nurses, the CNA's the Volunteers and everyone else that helped make his last several years "easier" on me.
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Just because Hospice gets into the picture it is not necessarily the end or a death sentence. None of us can change the inevitable, only make the path as comfortable as possible. My mom has been receiving hospice care for going on 2 months. I have posted here in other places. It has been both a blessing and a curse. The expectations of family members were not made clear and they have not done their job as well as they should have. Mom has developed sores on the bottom of both heels in spite of those areas not even touching the bed. She is in bed pretty much 24/7. The thing with hospice though is that they may be able to arrange for some equipment that would help lift your husband. I would only suggest that you investigate more than one hospice program. And if they are going to assist with personal care, go to Walmart and buy duplicates of bath towels etc so that you aren't needing to do laundry every day. Good luck....
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Pitchbb: May God bless you on your decision.
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My husband has Alzheimer’s and COPD and I had been told for a while that I should check into Hospice but I felt that was me giving up and turning loose of him. Jim ended up in the hospital and he didn’t know where was or why. He continued to rip off his monitors. He was so scared there. I finally reached out to Hospice and the people I talked to told me he would not have to go to the hospital or doctors, I didn’t like, anymore and one doctor is in charge of his treatments and I have the finale say on his care. He is happy he can stay here with me and they will check on him a couple times a week and Volunteer’s will come and sit so I can leave to shop knowing he is in good hands, and the Nurses and Doctor are just a phone call away. We have pain meds if he needs it and now that I am not so stressed about making sure he is OK, I can sit with him when he asks me to because I know his needs are being met.
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The feelings you are having are normal and you are an amazing person and caregiver. You have given your time and energy to do what you could, but hospice is the best route to go now. While it is a very difficult decision as emotionally, physically it will be the best. You stated that your son and you are now unable to do some of the things due to him being dead weight, which can cause you or your son to injure yourselves while caring for your loved one.
You are so right it is God's will and while it is a very difficult situation, let God help you. Maybe you should see a priest or pastor for some counseling especially during this time as they have a great ability to help you deal with all the emotions running through your mind.
Best wishes during this very stressful and emotional time. Hospice is the right decision, I have experience with them and I can say it was a welcomed and very good experience.
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You are making the decision, and the pain is a natural part of it. Unbelievably as it seems, such feelings are coping. I too had a good experience with hospice for a relative. Bless you both.
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My father was given 2 to 4 months to live and placed on hospice. He lived another 21 months and it was an amazingly positive experience. He loved being doted on by the hospice CNA‘s and nurses and really enjoyed having a companion come in for regular weekly visits. He did not take advantage of the spiritual guidance as my brother is a minister. I learned quite a bit about hospice during this period and cannot say enough about how positive the experience it was. The nurses and CNA’s were able to care for my father in a way that I never could both because of their training and because of their experience dealing with people with failing health. My fathers dignity was maintained because I did not have to take care of him personally, in other words, bathe him, clean up after his messes. A couple of things we did that might be helpful for you.
First, we placed my dad’s hospital bed in the living room, which was the center of our family life. This gave him the opportunity to be involved in family life and not miss out and feel like he was a abandoned in his bedroom. We altered our traffic flow and lifestyle to meet his needs by keeping the house quiet when he needed to rest and inviting friends and families over when he was up to it.

The other important thing we did was to give him goals. The goals were mostly events for him to look forward to. For instance, family members’ birthdays, holidays the family celebrates, a friend visiting, a trip to the zoo, celebrating milestones, etc. we kept the goals simple so he could manage with his vascular dementia.

Hospice is incredibly helpful and not everybody who is placed on hospice stays on hospice. There are many people who have been taken off of hospice; in fact, Medicare requires the doctors to do regular check ups to see if the patient still qualifies for hospice.

I recommend that you sit down with several different hospice providers in your area and get an understanding of what the services they provide are and how the services are helpful for both your husband and you and your family. Medicare covers the cost. Hospice is about providing comfort and care.
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👋..
You are an amazing caregiver.
You will be rewarded for loving your family trust me!
It doesn't get easier just look at this in the eyes of God. Take lots of viedo because you're going to miss their voices. Give lots of kisses 😘 have someone take the pictures of you guys together.
Heaven is an awesome place to relocate to.
Visit the experience of Heaven on YouTube by Kat Kerr ..your life will change.
I had the pleasure to taking care of my Auntie and when I was in it was sooooooo hard because I never had this type of responsibility but the Lord helped me in everything !!!❤.
It takes time but if you trust God he'll walk with you always 💯 You may not see him but he's right there 💯.
Praying for peace and favor for this journey 🙏 it will not last forever. You are loved.❤
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Pitchbb, we are all going to die, including you and me. Palliative care stops pointless and unhelpful medical meddling. Hospice does the same, and adds in lots of support. Neither of them bring death any closer – in fact for many people they avoid early death eg from unnecessary surgery that goes wrong. Stop trying to fight God. You and your husband will be glad for you to relax. Love, Margaret
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i didn’t want mum to go in a hospice as I’d cared for her so long,I was worn out myself with I’ll health but I was advised it was for the best. Bless those hospice nurses,drs,and all staff they were wonderful and mum was so contented in her last hours .I stayed day and night for 3weeks at the hospice and was treat like one of the family.they were lovely
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As time goes by for you to let "him go"....He is missing the benefits of Hospice Care.
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Hospice offers many services that will make both of your lives better. Your LO can be one hospice many months...... Call and have a consult and get the paperwork "set up" to use for when you are ready.
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Have you tried a "sit to stand" device for transferring him to wheelchair, I use it all the time to do that for my wife.
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We were surprised to find out all the things hospice could do for my father to make him more comfortable and help lift his spirits. We just waited too long to engage them. My mother's favorite thing was they washed her hair for her. Hospice thought of so many things that we didn't. It's a big relief.

Also, we moved my mother's bed into the dining room so she would be on the main floor and not have to use stairs. That put her in the hub of the household where she could feel a part of things.
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Hospice is not about dying but enhancing what life there is to embrace. It is supporting the patient, the circle of loved ones (you!) along the journey.

Two very dear friends both with cancer diagnoses that were deteriorating did not want Hospice as both said, "I'm not ready to die". I replied, to both knowing their spirits, that if the disease could be beat, they would. My suggestion was that it would be better to have a team that they trusted now while they didn't need them except maybe every week or two, then to bring strangers in during a crisis.

I asked them to do one favor for me. "please invite Hospice to come JUST to tell you about what they do, what they offer." Both did and both signed up that day. What made a difference for both was the philosophy that Hospice embraces life and supported their decisions.

They will support you, confirming you do not need to be strong or not be sad or angry or that you are giving up on him or that your faith isn't strong enough. Your feelings are what they are and not to be judged. They will be a stew in a huge pot overflowing. You never know which will pop out of the pot at any given time!

As I asked of the two dearest friends I've ever had, I ask of you: "please just call Hospice to come for an evaluation to hear what they are about and can offer in this most difficult time for all. If it is not the right time or decision, that's ok. It may be at a later time".

Godspeed on the journey however and whenever it takes you all.
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You are not "giving up on him" to begin Hospice Care. Hospice will not cause him to die sooner, nor will avoiding Hospice keep him alive longer. His prognosis and decline will run their own course. There may not be much "good news" or improvement along the way; just help him focus on what he might be able to do that day. "Going on Hospice" does not mean a team of Helpers comes in to take over his care. You, your son, other family or hired helpers would go right on doing day-to-day care taking. Hospice would send a nurse, perhaps twice a week, to checks vitals and refill medications. On another day or two a Hospice Aide might come to help with bathing. That's about it. At least that was our experience with my husband's Hospice.

It was helpful that the Hospice nurse and the aide came to the house and that there was some supervision and support concerning my husband's care. My husband would sometimes talk about "getting his strength back up" so he could do something more ambitious, but, of course he was never going to "get his strength back up." One day when the Hospice nurse asked him " how he was, " he said, "I'm a dying man." She paused and then said, " Today? " And dying was definitely not imminent that day, so that reminded us both that my husband was still there and was still able to engage with the world to whatever degree his energy permitted.

That response from the nurse was one of my favorite moments during Hospice supervision.
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Talk to his doctors and find out what his prospects are. Hopefully you know what his medical directives are, whether he wants heroic measures to stay alive (if the doctors say that he'll improve with procedures or medications). The main difference with hospice care is that it is comfort care (pain management, etc.) and you don't try to fix things. You are letting nature take its course. You can find out whether his condition will allow home hospice care or whether he needs to stay in the hospital. It sounds like he may be may be too big a man to handle without equipment. You and his doctor can decide whether to tell him what his true prognosis is. All the best to you and your husband. You'll both have to be strong.
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I had dinner with a longtime friend - a gentle honest person - who I see once every few years. In talking about his recent health scare, he mentioned almost dying, “I saw the light. Yes, it’s real” and talked about getting better, The comment was made casually but with the kind of conviction that you’d have if you said 2+2=4.

You’re not giving up on him. You’re trying to figure out how to let go.
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Inoted of Hospice, Please start with Palliative Care.
It's better and they continue with Care more than just Comfort Care like Hospice which is really there to try to keep you pain free by medicating you.
GI've your husband time to recoop from UTI's and Septis.
Even when patient has a Foley Cathiter and you know gets UTI's all the time, Palliative Care will do a Urine Sample and Culture and prescribe Antibiotics to Cure the UTI where as Hospice Dr won't order a UTI and try to tell you that it's just their dementia getting worse and then when the UTI gets so bad where it starts making them talkative, hallucinate and just become a different person, they still don't offer antibiotics, instead say the patient is Agitated, Combative, Hallucinating and they want to give a Psychotic Drug to Calm Them.
That's exactly what happened with my Dad.
Please start with Palliative Care, you won't be sorry.
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My husband died of a brain tumor and toward the end it was much the same for him. My dad died of vascular dementia and I took care of him here in my home. It was harder to accept for my husband than with my dad but once it was done hospice was such a big help. By the time they are bedridden the comfort meds are so helpful and the hospice staff I had in both cases were so helpful and compassionate. It’s hard, I know but you can’t carry all this weight. When it’s time it’s time. Also, please seek out some kind of grief counseling. It was a lifesaver for me. I found mine through church, but hospice can help with that too.
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I was ready to accept hospice before my husband was. It took him a long time to accept that he was not going to get better. But hospice made it possible for ME to have more of a normal life during our last few months together. Having hospice meant that I could be a wife to my husband, not only a caregiver.

I could leave the house knowing that he would be safe and cared for while I was not there. I could not have made it through the final months without the nurse, aides, and chaplain.
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my mom was on hospice for 2 years and I basically used them for routine labs and medication renewal. Get rid of that foley catheter if at all possible because that can cause urinary tract infections and makes care a lot more difficult. Those in itself are painful and uncomfortable, and should be used strictly for some medical reason like urinary retention.

I never had a catheter for my mom -- I changed her diapers frequently and she lived to be 90 years, 3 months after 15 years of Alzheimer's AND she was an insulin dependent diabetes--and died with intact skin

Unless a person had urinary retention there is no reason to have a urinary catheter.

Hospice will not do much hands-on care. You will have to do that yourself. You get an aide for about a half hour twice a week, and since I had to change my mom frequently I did not bother with them. Also he will have to be on a regimented BOWEL schedule because they can get impacted if they do not move their bowels, even as little as 4 days for some.
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Dearest, you are not giving up on him. You are making a decision to keep him as comfortable as possible for as long as possible. You need help. HE needs help. Please accept it and enjoy the time you have together as much as possible. Play music you know he loved. Reminisce. Laugh, Cry. Love. You are in my prayers.
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I felt your grief reading this. I am so sorry for what you and your family are going through.
Im not sure if he is yet at the stage of hospice - and I’m not here to give you false hope or question your choices at all - just give you some thoughts (that only you and your family can think about to see if they would be possible for him). 🙏🏼
My mom had a large stroke in 2019 - she took so long to actually wake up - to be able to eat or speak etc. Once she finally was slowly getting stronger - she got a UTI with encephalopathy and when we came home with home health therapy is when covid hit and we had to stop everything. I did the best I could at cognitive games - puzzles and activities as well as small amounts of just basic range of motion therapies to keep her body moving while in lockdown for a year! She is also incontinent and I transfer her by electric hoyer to her wheelchair.
I can only tell you after 5 months of treating a UTI in 2021 we just got back to home therapies a few months ago - speech was first to get the cognitive parts going again (as UTI and infections slow that down) she aced that and now we started PT and OT in home again. They can try to get him stronger to transfer again or can help get you and the family trained on using a hoyer so he can still sit in his wheelchair - go for strolls outdoors - you could hoyer him into his recliner etc.
You could speak with a psychiatrist about a possible medication to help (we just started one and I am already seeing a difference).
We also had come home with an in home NP service who helped a lot with getting bloodwork done from home to get all moms electrolytes up and her vitamin D3 up as all these things were affecting her cognition as well as her strength. My Mom will always have risks for vascular dementia with the size of her stroke and I often thought and have experienced the “this is it moments” but they weren’t. Again everyone is different - I do not want to bring you false hope or change your mind - I just want you to know there are additional resources that may or may not help and for your family to have the information so you can choose what you feel is best for him at this time - you know him best.
Moms UTIs stole all her gains every time but so far she has been able to regain them and get stronger with getting back into her in home therapies.
wishing you the best for you and your husband.
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Hospice care might not be what your husband needs just yet. Palliative care could be what's right for him right now. Palliative care level is higher than just some assisting a person with ADL's like bathing, medications, companionship, etc... but is not hospice level. A person can be in palliative care for years before needing hospice.
My last caregiving position was for a woman with LBD that was completely invalid. She mostly bedbound but could sit in the wheelchair for short periods of time. That didn't last long though. Totally incontinent both ways and in diapers, couldn't hold a conversation or even sit up on her own, and had to be fed. Other than the dementia she didn't have any other serious health issues and was not in need of any pain medication more than a Tylenol or a small dosage of lorazepam for restlessness and anxiety.
Then hospice made their way into the situation and insisted she only had weeks to live. Her adult kids were thrilled because now Medicare and insurance was paying so they jumped at it. Myself and the other caregivers were private-pay because this client was not hurting for money.
Hospice insisted that she then be put on morphine for pain and on serious psychiatric drugs like halidol and klonipin. The day before they came in she was fine on Tylenol and lorazepam.
Anyway, us caregivers were dismissed in favor of the insurance-paid hospice ones. The client was 'graduated' out of hospice care and lived for another two years after this.
Your husband could very well not need hospice yet and I would recommend putting them off as long as possible. He may do very well getting palliative care. Talk to his doctor about it.
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Making the decision to accept hospice, while a technical decision, means acknowledging a very difficult emotional truth, that your loved one's health has deteriorated and there's little you can do about it. It's a gut-wrenching "line in the sand" that no one wants to cross.

Accepting hospice means accepting so much more than simply accepting the support and services it offers. For many of us, it means family members must emotionally and mentally accept this new phase for their loved one, a phase that will likely mean your journey of escorting your loved one on their final journey.

You've gone through so much, Pitchbb, and you'll continue to go through more as you support your husband. You matter too. Scream at the moon and rail at the sun. Pray for your husband and pray for yourself. Find a peaceful spot to take deep breaths and just be. Play joyous games with your husband and allow yourself to laugh. Accept counseling from hospice. Accept support from hospice, from family, from friends, for yourself, and your friends on this forum who know what you're going through.

I am so sorry. Please let us know how you and your husband are faring. *hug*
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I thank everyone for their responses their support and encouragement to try to do what is best for my husband and myself is invaluable God Bless everyone of you.
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Hospice not only helps you care for him, but can provide reassuring and useful support for you along this journey. Many people wait too long before accepting this assistance. You can ask someone to come answer any questions you might have.
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