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💧
The compassionate care given to my mother was remarkable. I will forever be grateful to the entire staff. She was 95. She had Parkinson’s disease and slight dementia.
I miss her terribly but I am glad that she isn’t suffering and is reunited with my father in the afterlife.
Hospice is not about giving up. You have been a wonderful spouse; you have honored your vows to your husband and your marriage. You have fought to keep him home, safe and comfortably. Adding hospice is about helping to continue with that goal - because, unfortunately, nature is a b***h, and you have come to a fork in the road. You can continue with no help, or you can add the services of hospice. Your cares have become too much for you to handle on your own, and you are seeking help and that does not make you a failure.
Many people call on hospice for assistance. Some people have wonderful experiences with it (we did) and some people have terrible experiences with it. But the one thing we all have in common is the grief at the knowledge that as much as we might wish it, no matter how diligent and loving we are taking care of the people we love, their journey is going to end, sooner or later. We chose hospice to make the last weeks easier and more peaceful for everyone. I expected hospice to make things easier for my mom; I was humbled and grateful that they worked so hard to make it easier for ALL of us.
Call in hospice and talk to them. If you don't like what you're hearing, you are under no obligation to engage their services. if you agree to their services, you will still be your husband's primary caregiver; but you will have a team of people for added support.
If you are concerned with what happens at the end, ask them. Ask them, specifically, about medications at the end. There are many people who feel that hospice gives too much medication at the end, thereby "killing" their loved ones with an overdose. If that is a concern of yours, also ask your husband's doctor what will happen if your husband is in the hospital at the end - what sort of medication he will receive, how much and how often. If you make your decision from a place of knowledge rather than desperation, it will be easier to accept once you come out on the other side.
You and your family will be in my prayers. (((hugs)))
I got all the supplies I needed to keep him as healthy as possible.
I got all the equipment that I needed to keep him as safe as possible.
I got all the support that I needed to keep me "sane" and able to care for him safely.
I got a Nurse that came weekly to check on him as well as order the medications that he needed.
I got a CNA that came several times a week, then as he declined another came to help.
The CNAs and the Nurse always treated him with respect, talked to him even though he would not reply, he often smiled.
I got a Social Worker, a Chaplain and others if I wished.
I also was able to request a Volunteer that would come and sit with him if I needed to get out.
I did not take advantage of it but I would have been able to place him in Respite.
All covered by Medicare.
What items I could not get through Hospice I could get through the VA and Hospice worked closely with the VA to get those items.
My Husband was on Hospice for almost 3 years!
Welcome Hospice, their goal is the same as yours. To keep him as pain free as possible. To be able to help you through a very difficult time. To educate you and support you as much as possible.
((hugs))
By the way if you have not yet chosen a Hospice there are 2 types.
FOR profit
NOT for profit.
The one I chose was/is a NOT for profit.
I think it does make a difference.
But interview them just like you would interview any medical professional.
They have reviews on line, they have FB pages. Check them out.
They'll supply the right equipment to get him out of that bed and back into the family room, for a start.
Call and talk to your providers tomorrow.
Hospice does not "kill" anyone, they don't discontinue medications until you decide that's necessary. They treat things that cause pain, even if it comes up after you've started hospice.
My mother has been on hospice for almost eight months. She has congestive heart failure, vascular dementia (which she's had for seven years), macular degeneration, and severe edema in her legs. About three months ago she developed terrible gout in her hands and elbows from drinking nothing but Ensure for three meals a day, and we treated it with medication and new low-sugar milkshakes. We didn't ignore it or the awful pain it caused; we treated it. It just didn't involve going to the hospital, thank goodness.
We finally discontinued her medications about two weeks ago, because it was clear she was no longer metabolizing them and they weren't doing anything. I just came back from seeing her, and her edema is completely gone after two weeks with NO diuretics. Go figure.
She's winding down now and could go any day now. She's completely comfortable, the hospice nurse now comes every day and I meet her at the nursing home so we can care for her together. It will be a peaceful end, and isn't that what we all want?
Hospice is for the family, not just the patient. Talk to their social worker and see what services are available for you and your kids. I know they'll have a chaplain who will happily stay in touch and help you, and they may have other services. They'll stay in touch with you for a year after your husband's passing, so you won't be going through it alone.
Good luck, and you will make it through this.
You have essentially been in emergency mode, and now that you don’t have to attend to every need the grief is coming out. This is totally normal. It’s horribly uncomfortable but it’s normal. Don’t fight or judge the tears.
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*
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.
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.
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.
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.
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.
You’re not giving up on him. You’re trying to figure out how to let go.
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.
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.
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.