My husband has started aspirating when he drinks. He has been put on honey thickened liquids. He's in the hospital with pneumonia. The doctor says he has silent aspiration. I can't tell when he aspirates. He doesn't feel it. I'm afraid to bring him home. He can barely speak. Talking is such an effort for him. He had a peg in. But they say he can still aspirate on his saliva. He still wants to eat.
He's going to have rehab at a local nursing home for 2 weeks.
I hurt my back helping him 3 weeks ago and I'm still not much better.
I've been considering long term care for him even though i know he doesn't want it. I don't know how much longer i can take care of him at home. He needs help with every thing he does. It is exhausting.
I feel guilty even thinking about it.
What do i do?
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Meykat4
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So sorry to hear this. What you have been told is true about silent aspiration. I am glad he is not suffering because of it. Can I ask if he is on liquid antibiotics? That really helps. However one day it won't as you know.
You have to think about your own health too you know? If anything happens to you who will take care of your husband then? I am assuming you are in the USA and our system in the UK is very different. However some people in the US appear to get help?
Have you been in contact with the Hospice? They seem to be good. It seems to me your husband will need more care than you can give him. So sad as this is, and many of us have had to face it. Please talk to the doctor or neurologist? Ask for advice? If they can't help come back to this site? Tell us which country you are from then maybe we can help a bit more?
Thank you for your reply. We live in the USA. We have been speaking with palliative care. They say my husband's situation is dire. He's lost 20lbs in the last 3 months. Hopefully getting tube feedings will give him the nutrition he needs. I will call his neurologist and see what they suggest. Thank you for your advice.
I agree with Marie, you can't be of help to your husband if you injure yourself. Do you have other family members that can help? Checking to see if the doctor feels hospice care would be helpful is a good idea. If all else fails just try to explain to your husband a nursing home is the only resort you have left to make sure he is cared for safely.
Hi Meykat4, I cannot tell you what you should do, but I can tell you about me and my son. I live in Los Angeles, CA, USA. We each had our own home. He lived about 8 minutes away.
My son was just barely 55 years old when he died on May 4, 2017 of PSP. He died 5 weeks after his 2nd bout of aspiration pneumonia which put him in the hospital for approx 7-8 days. The first bout was taken care of with antibiotics at home. My son was 5'10 and weighed 123 pounds when they sent him home from the hospital.
My son LOVED his home. I cannot tell you how much. He was not married and had no children. His day job was as a math teacher to support his night job which was as a free lance bass player.He was first DX with PD Jan, 2015, although the first symptoms appeared March, 2014, and were DOUBLE VISION, FATIGUE, SLURRED SPEECH......no tremors, ever. He was DX with PSP Jan, 2017. He was pretty self sufficient up to Jan, 2017, but after the PSP DX he was afraid to stay alone in his home. I hired a full time young male caretaker, 22 years of age, mon-Fri and stayed with him Fri-Sun. I would come by several times a day to say hello and visit.
When my son came out of the hospital he said he NEVER wanted to go back. He wanted to stay home. While at the hospital he agreed to a PEG. At home he went from palliative care to hospice care. As he went down hill....practically blind, seizure, on oxygen, unable to do anything without help, severe constipation, thrush, bed sore, etc. I could NOT left him, or help him to scoot on the bed. I paid for weekend help from 6pm-6am. Each night was approx $250. He asked me, in the form of a statement, that he was not going to get better, was he? I replied, "that was true". He made a decision to NOT be fed. He died at home.
I, the first year after his death, often questioned myself as to whether I should have put him in a long term care faciilty and visited him 3-4 hours daily. I too was hardly keeping my head above water and thinking that a facility has many personalities working for them, and can share the burden and go home and get a good night's sleep, and perhaps my son would have lived longer, and adjusted and benefited. In the end, today, I no longer think that. My son died at home and that's what he wanted.
I think that whatever decision you make IT will be the correct one. No matter the decision, after, you will probably 2nd guess yourself. I think that's part of being human. What was helpful to me was to keep a journal of what he had gone thro each day. What I had gone thro each day with him. That helped, because what is important is to UNDERSTAND what was happening, and WHY, whatever decision "was" made, you know "why".
On this site there are those who kept their loved one at home and those who placed their loved one in a facility. I think there were NO wrong decisions.
Keeping you in my prayers.............Margarita, Los Angeles, CAlifornia, USA
Thank you for your reply. I'm am very sorry you and your son had to go through this. It is a consuming disease and exhausting to all who are involved.
When my husband chokes it is so scary. The antibiotics seem to be working on the pneumonia. But he's still eating so it's only a matter of time before he gets pneumonia again. I don't know how long that will be. He's been in the hospital 4 times in the past year.
My husband is so sad. He hardly talks anymore. Hardly smiles. It is so emotionally draining.
I guess I'll know when i can't handle it any more.
Yes, I agree with you that the choking episodes were frightening. His seizure was too, but I was fortunate because the hospice RN was there when it happened. It happened in the hall. He was walking with his walker and his paid caretaker was walking beside him. I was in the kitchen preparing his PEG meal. Looking back, PSP as it progressed, was frightening and heartbreaking. I remember when Jeff, my son, told me he couldn't see. We were watching a favorite program of his.
The truth is that PSP is a horrible disease.
Looking back, as horrible as it was, I am grateful that I was there to comfort my son. AS I shared, that first year I had so many 2nd thoughts. Would he have lived longer with the care in a long term facility...........now I don't care. He was where he wanted to be, and he and I, and his paid caretaker, and the hospice staff....we all made it through. The other side of the discussion is that I still have flashbacks, while awake, of things that happened. His paid caretaker and I still have lunch with each other, about every 4-6 weeks, and we talk about Jeff. That is a great comfort.
Since he is going in for two weeks with a local facility, the both of you will gain much from that experience and perhaps give you the answer. I think that is WONDERFUL that you will have that opportunity to learn from.
As a former CBD spouse, I'm so sorry about your husband's decline. How heartbreaking a time this must be for you both!
But as to your question: A lot has to do with finances. We hate that the direction of our lives would come down to this, but realistically, what is the $$ difference between having home support care aides in twice/ or 3 times/day compared to Residential Care? If there is sufficient Home Support, keeping the loved one at home may be a more viable choice., and clearly what most of the afflicted persons want (according to everything I've read here and experienced in my life).
Not meaning to be cruel here: He is going to die, Meykat - and you know that - as I knew that with my CBD hubby. He will die earlier than he should have - because of this awful disease. So how do his last years or year look?
Keeping them safe from harm or aspiration or ...whatever... is a very cruel game: We think they will be "safer in facility care" - but will they be? Can't they still aspirate in a facility? When they are going to die of aspiration, infection, weakness, seizure, stroke or ... what in the end is better? In a care facility or at home?
PLEASE don't think I'm being judgmental about Care Facilities - I'm not!
If your spouse is present enough and can indicate what he wants, and would think he can live longer - and wants to - by being in a Care Facility, then if that's affordable for your family, that is the way to go!
If it's a matter of economics or logistics: that he prefers to be at home: YOU prefer him to be at home - as long as you aren't crushed by the care - and can bring in sufficient Home Support to help you deal with him, and that's both accessible and affordable - then that's the way to go!
The one thing, Meykat, I'm glad I did, was seek my husband's answer to the question: "Are you prepared to accept the risks of staying at home: Knowing there may be a time when a crisis happens and the Emergency Personnel aren't immediately here (...as by the way, they wouldn't be at most care facilities..) and you will fall, and may have more hospital admits, and and and....?" and I need to get away, and sometimes there will be a daughter here or someone else so I can be away for a day or two, and his answer, for what it's worth, was "Yes". He knew his life could be shorter, but he wanted to be here (and I COULD get enough home support in to keep me from going crazy...)
So much depends on your circumstances, Meykat, but as a fellow CBD spouse, my heart is with you and supports you whatever you decide. Blessings to you and your hubby - you both deserve them!!
Anne makes a good point about risks associated with both staying at home and living in a longterm care facility. I have some regrets about my father's care and wish that I had worked harder to keep him in his home. He did not have a neurological condition but was quite elderly and after he suffered a bad fall in his home of 50 years, we were worried about him and talked him into a nursing home where he would be "safe." Two months after being there, he tripped on a too-long trouser cuff, broke his hip and died two weeks later. At some point, whether it is due to age or infirmity, there is no safe place. I also like the idea of asking him what his understandings and wishes are about where he lives and, sadly, where he is probably going to die.
Marilyn
Finding out saliva could trigger aspiration pneumonia was a surprise. PSP will have its way.
It was a surprise to me as well. Even with the peg, he could aspirate. It's a scary thing. Hopefully it's less of a chance than by drinking and eating.
Hi Meykat4, my heart breaks fo all the caregivers. I myself have psp and I have talked to my kids (no spouse, widowed) i have no desire to continue in that state. I do not want tube feeding, when it gets to that point then I pray God will take me home. None of us want to be burdens to our family. I am leaving instructions for DNR and no other drastic measures to keep me alive when realistically I we all know what lies ahead. My greatest fear is not dying but burdening my children. I also want to stay home as much as I can but if it’s Gods will for me to be put in a care facility I pray I will handle it with grace. I know not what lies in the road ahead of me and if it was just me I certainly coul deal with it but putting the hardship on my children is breaking my heart. I don’t have any answers for you but I feel like your husband would definitely want you to take care of yourself. This site has been awesome talking to others involved because outsiders do not understand. My prayers are with you and your husband. God Bless❤️
Bless you so much! Thank you for your wonderful words. I wish there was easier path for all of us. I know as my husband's caretaker that your children very much want to be there for you as well. It is difficult but by the grace of God i pray that everyone suffering with this horrid disease will have a smooth peaceful transition to heaven. God bless you and your family!
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.
These are our experiences:
•Phlegm and choking: The first thing is to remain calm during episodes of truly shocking coughs. The second is that a physician rules out an infection in the respiratory tract. (Fever is an indication usually either pneumonia or urinary tract infection (UTI) in PSP patients).
•It is not a big problem that the patient swallows his phlegm. For phlegm to be fluid, it is important to drink liquids. Steam inhalation from boiling wáter in a bowl with a few drops of Eucalyptus essence and a small spoonful of Vicks Vaporub (Olbas Oil in U.K.) and a small spoonful of marine salt, with a towel covering head and bowl helps. (One to three times a day.) Medications like "Mucosan" (Ambroxol hydrochloride) twice a day or “Fluimicil Forte-600” (Acetilcisteine) one by day, help. Ask physician.
•In case of choking, raise both arms at shoulder height, breathe only through the nose intensely if posible. I not, inhale air intensely but not very fast through the mouth. Retain air a couple of seconds and then force the cough.
•Also here, to avoid in the diet: coffee, carbonated beverages as pop or soda (or eliminate the gas by agitation before giving it to the patient), chocolate, orange or grapefruit juice, helps. There are some foods to avoid.. things like rice, foods that crumble easily, sticky foods, etc.
•There is a suction machine which helped a lot with the very sticky phlegm. We have NOT used it yet.
•A steam atomizer to keep the air in the room moist helped, too. (40% - 52% moist advisable.)
•The physiotherapists have exercises reinforcing trunk muscles to improve the cough response to choking.
•Avoid dairy products, especially before bedtime seems to avoid the increase in viscosity of phlegm.
•Raising around 15º a 20º the head of the bed also helps.
Hug and luck.
Luis
The first thing you have to do is take care of yourself. Sometimes the best thing we can do for our loved ones is get them the help they need even if they are afraid of it.
Kathy, I was in your position a little over a year ago. I had broken my upper back three months earlier. At the same time as I got hurt, my husband's care needs increased dramatically. My doctor was insistent that I needed more help caring for him, I still felt that I could do it and that my back would get better over time. I was able to find a little more help at home and we continued to struggle along until he could no longer use a bedside urinal on his own and I had to be up several times a night helping him. Without much sleep and my back pain, I soon found that I couldn't continue. I was lucky that my doctor knew of an assisted living situation where the care would suit my husband's needs. I reluctantly put him on their waiting list and when an opening arose, we moved him there. He wasn't happy at first, but over time, they have accommodated his wishes and he seems much happier there than he had been at home prior to that. It took awhile for me to get back to a normal sleep pattern. I had thought I would just sleep around the clock for a day or two and be good as new! Unfortunately, it doesn't work that way. It took me about three months to sleep normally again. Over the past year and a half, my husband's PSP has progressed so much that I don't feel like I could take care of him at home even with round the clock caregivers. I honestly believe that this was the best decision for both of us because we are both better off. I have a little bit of my life back and my husband is in a safe place with excellent care. He can't communicate anymore, but seems to be as happy as possible under the circumstances. The best I can do for him now is visit as much as possible, take him things he likes to eat, sit and watch TV with him, tell him what is going on with our family and LOVE him. I still wish I could have done more, but realistically, I know that I did all that I could and I still have my health.
I know what a tough decision you have to make and no one else can tell you what to do. I hope this helps a little.
Whatever you feel in your heart is the right decision for you. I believed I would not be able to care for my husband at home even with two 24 hr caregivers. He was doubly incontinent, hoyer lift to transfer to a chair, and combative at times. I saw as many as 6 people at a time trying to do his personal care when he was having a bad day. I knew if I brought him home, I would not be able to give him as good care as he received in the nursing home. Every nurse and social worker in each of the 5 facilities he was in suggested I not try to handle him at home. If he were home, I knew I would be by his side continuously. At least in the nursing home, I went home to get a good night's sleep each night. It's sad that I didn't have him home. I wish I could have, but I don't regret the decision. I think it would have taken a great toll on my health.
These are decisions that no one wants to make. God bless you.
I am in your same situation. I have found a little help recently. Today I hired a women to sit with my husband so I could play bridge. She also is helping me clean and run errands. I will continue having him at home with me as long as I possibly can because while visiting friends in the nursing homes I see them waiting too long for the bathroom and sitting alone for long hours. Even though the nurses are very nice they are understaffed and overworked. I think I can prevent more falls at home and Gene is very calm and satisfied. I must admit that I get very tired from all the care and lifting. I worry about the time when I can no longer cope but for now, today, we are where we want to be. Prayers for you. Nancyxxx
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Dad newly diagnosed with PSP
Can anyone relate to these feelings?
Home from home...
Where are we in this process?
