Hi guys, John's swallowing has been steadily going downhill. We had another swallow test done and the therapist put him on the level two dysphagia diet. Basically soft foods - level three is all pureed foods. He has elected to not have a feeding tube in the future. So aside of the seizures, daily falling and his high impulsivity level; we have now added swallowing issues. Per the therapist, in order to slow John down, he must put a small amount of food on his fork and put his fork down after each bite. John also uses the Provale cup that releases one teaspoon of liquid per sip. The therapist had him eat his breakfast in front of her and she was constantly having him stop, clear out his mouth. Surprisingly, when he follows her instructions the coughing and choking is minimal. My problem is that when we got home, he went right back to the old way. Needless to say we had a fight. He has little reminder cards, and her instructions right in from of him. John is a master at being passive aggressive and at times he looked right at me and shoveled in the food. I asked him if he is trying to end up either on level three and/or in the hospital with aspiration pneumonia. He doesn't answer. Finally I asked him what he cared about. He said seeing his future grandchildren. So, he evidently does have a goal.
I do not understand why he doesn't appear to want to do anything to help himself. No exercises, not eating correctly & etc. I feel like at times I am willing him to fight. I am knocking my head against the wall to keep him healthy and safe. Is that wrong? Why does he not seem to care? Is the apathy part of PSP? He already takes an antidepressant. Does that need to be increased? I am tired and exhausted and simply do not understand. Do I just let him eat until something bad happens? I don't think I can let that happen. I know I will never go quietly into that good night - John I think does not really care.
Would appreciate any an all insight.
Hugs, Alice
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I can only say that I went through something very similar with Liz. I spent days trying to work out what was happening and I am not sure if I ever really understood it. Here are the thoughts I had, maybe they will help a little:
Cognitive processing is slowed so the ability to reason is diminished. Reasoning with her grew more and more pointless because of this.
As the ability to process diminished so too did the fixedness of her thoughts increase. As if someone hanging on to an idea when they cannot easily develop new ideas.
This anger thing!!! Liz would be very passive aggressive with me, sometimes for weeks on end and then sometimes it would just stop for a few days. I am sure the inability to process was part of it , but there is another explanation too. Our thinking comes from two different processes in the brain. The old (pre cortex brain) works on hormones giving body responses (Fight or flight is one of these). It is a semi automatic system,
The cortex with all of its nerve wiring is electrochemical. One of its tasks is to make sense of why we have particular feelings. So if I am feeling angry (limbic system) my cortex has to come up with an explanation. If there is one it makes one up. So guess who the anger get's pointed at! The person closest and around the most.
I tried quite a few different psychological approaches each in a planned and consistent manner. None of them worked. Not even the behavioural approach which will work on any mammal! My behavioural approach was to be warm and positive doing lot's of extra nice things when Liz was being nice and less available with less extra treats when she was being horrid. It had no impact whatsoever!
Again I put this down to the fixedness of PSP.
Sorry this has been a long read and all I have done is tell you I failed on this one.
The mistake I made was not getting the professionals involved enough. I would suggest putting the problem back to them explaining the passive aggression too and the wilfulness of it all.
I know how absolutely wearing and heartwrenching these behaviours are.
So I am reaching out saying it sucks and wishing you the strength I know you will need.
Kevin, thank you. It is such a hard fight - especially when your loved one looks so normal. I know, I really do know that John is doing the best he can. Thank you for sharing your struggle as it made be feel I was not going crazy. When there is no one there to give you a break and it's just you 24/7, you/ I tend to get caught up with it all. I think I am so afraid that I am losing him that it colours my whole perspective.
Sounds like you are dealing with dementia and apathy -- both of which can be part of PSP. It's very hard to fight yourself when the person with PSP is not fighting.
My advice is to consider what you would want your spouse (or family) to do if the roles were reversed. Would you want someone "nagging" you all the time in the name of safety? Would you want someone pointing out to you that you are not thinking wisely or behaving smartly? Maybe the answer for you is in there somewhere.
Rriddle, while your response was harsh - you are 100% correct. Thank you. I never was a nagger, but I am one now. You're also right when you say no one would like to live like that. I sincerely appreciate your honesty. I needed that. So hard to find the time to step back and reset the compass.
I hadn't intended to be harsh as that's not my way. And, in fact, I used to nag my dad (PSP confirmed through brain donation) and point out to him that he was making poor decisions. At some point, I stopped. Not really sure why.
When I was writing the reply to you, I couldn't figure out how to word those questions to allow for all outcomes. And that to me became rather telling. Who of us wants to be nagged? Who of us wants to be told we are making un-wise decisions?
Perhaps there are clever ways to get what you want (which is safety and long-life) without nagging or pointing out someone is being un-wise?
Not to worry, it's all good. I ran a plant for years and tend to be a bottom line type of person. I did need to rethink what I was doing .....especially since what I was doing was not working so well.
Alice, what worked best with my husband was to sit next to him while he ate and remind him as he took a bite. I thought it was important for him to feed himself as long as he was able. When he couldn't manage a spoon anymore, we used a lot of finger foods and I fed him the softer foods that he couldn't manage himself. You pretty much have to take over their thinking for them when it comes to eating. It took awhile for me to get it so don't beat yourself up over it.
As for the apathy, I think all of we caregivers complain about that. I think it was the hardest thing for me to understand. I just wanted him to have a little more fight. I know how hard it is to deal with.
Dear Alice. I am so sorry that you are going through all this. It sounds so very like my husband and I so I really appreciated Kevin's reply to you. Nigel has CBD and is certainly on a downward track at present. One thing I have done that has helped a bit is that I have changed the way I serve his food (of the same consistency as your Johns). I no longer stick to breakfast/lunch/tea times, giving him less but more often. I bought a much smaller plate with a ridge at one end and I give him small portions and try to leave him to it, although in the same room, and It does seem to have helped a bit. If he eats it all I offer him some more but he seldom wants it. I know it is not the answer but like you it was all getting under my skin too much, even though I know it is not his fault. I have just had to realise that I cannot try to work it out logically as his brain no longer works in that way. Good luck and big hug. AliBee xx
AliBee - such wonderful tips. Again, should have thought of that as well. but did not. Will put them into effect today! Sometimes I wonder which one of us is truly cognitively impaired!!!!! Thank you, I can always count on sound advice from you guys.
Actually, I don’t post much but I think you are all super nice, compassionate people. I’m very impressed by the kindness shown here....
I’m a retired RN and I already feel really burned out with my husbands PSP..... He has real issues walking even with a walker, speech rapidly becoming more slurred, falling, headed for a wheelchair soon. Somehow he doesn’t seem to see himself
The way he really is. Everyone tells me to enjoy my own life too...? At this point he can be left alone for a period of time during the day but not at night.So I’ve taken a couple of day trips which I really enjoyed.
I’ve recently hired a CNA to come 3 x a week to shower him. I’m trying to distance myself a bit and I know it sounds awful.
His hygiene is really bad. The other day he had feces on his way lower back and insisted he was ok to go to PT!!!!!! I try to get him to remove his jogging pants at night but he becomes irritated with me!! Like I’m bothering him. Um most people take their pants off at night. I’m very kind to him but in all honesty I’m a little worried that I will die first due to this stress. So I’m now making a concerted effort to take much better care of myself. Carving out time for myself, eating healthier,
seeing a counselor for support.
We’ve only been married four and a half years.......He is a lovely, kind man and I’m very lucky to have him. I’m going to keep focused on maintaining my own life too.
Bettina545, I find personal time is extremely difficult. Quality respite care here in my area is very expensive - $30/hr. Until he is accepted into our hospice program, then it is totally covered 100%. At this point I am unable to ever leave him alone. All our children (5) live away, so no help there. Good thing to start looking now as to what is available by you.
I read your post and wondered what state you are in as I am taking care of my husband with PSP and care ia also around thirty dollars but I contacted the local nursing home in our small town and asked them if their were any part time help or some that used to work there that might want to earn some money once in a while? They had two ladies contact me and they came to the house to see our situation and have been dependable careers for me and accepted a much lower salary and all they do is see to my husbands needs and read or play games on their phones. My husband watches tv 24/7 and sleeps a lot in the lift chair. This has given me time to see a dentist, get groceries, go to the YMCA once in a while and play a few cards. I can not afford too many hours but this arrangement makes it possible. The careers are skilled with him. Thinking of you and all of us in similar situations. Nancy❤️
Nancy, wow I never thought to do that! I am in Wisconsin - one of Milwaukee's suburbs. We've had a snowy and very cold (polar vortex) type of winter. Yes, $30/ hr with a four hour minimum ($120.00). I use them once a month so I can attend a caregiver support group. Otherwise, I take John with to all appt...hair, grocery shopping & etc. We move very slow so it's a fair amount of work. My back is taking a toll.
I will call around to a few nursing homes in the area and see if I can find something. Excellent tip.
I hope you can find help like I did. The last time I had Gene out was the 25th of January. It is getting harder and harder but with all the snow, I could no longer drive in the yard up to the ramp to load him. Even with a wheelchair, it is hard to lift him in my vehicle that I bought 18 months ago as he couldn’t get up and out of our car. Now I could really use a mobility van to get him out. Until the end of Nov. I took him out every weekday to the YMCA where he took a special Parkinson class and worked on a nustep but he could no longer handle the class even though he sat in a chair for the exercises. I had to get a shot and muscle relaxers for my back a couple of weeks ago but it is ok now. Yes if we injure ourselves their isn’t much choice but to put them in a home and they get much better care where they are comfortable and one to one attention. I would give you my email if you want. It would be more private. Good luck on finding help. Nancy
What a great idea!! We have a place right up the road here. My aunt even spent her last alzheimers days there. I know many of the staff. Thanks and be well🙂
No. Your hopes are understandable but it's probably not going to change.
Chris, pre-PSP, was enthusiasm and energy personified. He became apathetic and self contained. He was appreciative and sweet natured but un-involved.
As he deteriorated he tired and became more withdrawn with me. He made more effort with visitors.
I remember his stubbornness at times. He sometimes persisted in doing what I asked him not to do. For example on one occasion I said he was at risk of falling and if he persisted I wouldn't get him up. He couldn't get up on his own. He persisted and fell and I left him whilst I breathed ! Then came the battle of getting him up without risking my back. He was 6ft 1 and I'm 5ft 5
I know it was so hard for him to have lost control of everything. It broke my heart.
It's a relentless journey. Believe me you are not alone.
Well Jean you just described John to a tee! It is a relentless journey. I'm not the most creative person, but I did raise my kids. I'm sure I can pull something out of my ear to work around this newest hiccup.
Thank you for confirming I am not alone. There are days the isolation is overwhelming. Thank God that Spring is just around the corner.
You are so right Alice, it is isolating...And I tell Bob too that certain things are a hazard but he doesn’t listen. He watches so much TV 😩 and sits and sits. He doesn’t follow through with PT exercises etc. very oppositional at times and seems to treat me as if I’m somewhat of a nuisance. Lol.
People don’t understand unless they are involved with it....
Bettina - The fact that no one understands unless they are living it is why we all keep coming back to HealthUnlocked and SmartPatients. I've never felt so alone in my life as I did caring for my husband at home. He's in a care home now because I broke my back and couldn't care for him anymore. While I'm alone at home now, I can get out and see people which was really hard to do while I was caring for him. These sites are a godsend.
I think you did the right thing and I sincerely hope your back is better now. I’m so glad you are able to get out, meet with friends and enjoy life.
I cared for my dearest mother for 3 years until she died in 1987. I was only 30 then and had small kids. Well I’m 64 now and it continues to bring me immense comfort to
remember what good care she received. Then I raised my 3 kids. Then I card for my late husband now this. I’m a retired RN and nurses are first and foremost caregivers but I know I won’t be able to keep my hub, Bob, at home until the end. I just don’t have as much energy as I did when I was young.
I admire you and I admire everyone on this site!!!!!!!
It is so hard to see someone change their behaviour. My Mum was a stickler for table manners and to see her pick up a Yorkshire pudding and try to eat it in great big bites brought some amusement to my children! We have had to resort to feeding Mum as the the recklessness that comes with PSP is definitely a risk at meal times. We also have to use a cup as you describe and thickener (apparently in coffee you cannot taste it) We also have to give it to her once it is at a safe temperature to drink otherwise despite warnings of it being hot she will just try and drink it anyway. I know it is frustrating and I have to bite my lip sometimes in frustration at simple instructions not being followed and certainly not repeated. All I can say is persevere, try not to take anything personally and remember you are not alone.
Sue427, totally agree. In previous posts I described my John as Mr. PC - we believe he was born in a suit. It is so hard to wrap you head around the changes right before your eyes.
All you can do is take it a day at a time. Sometimes though those days never seem to end. Since drinking is not an option - I tend to call those days my "straight up" diet coke days-no ice !!
I never really had the problem of Ben overfilling his mouth as it was fairly early on, before puréed food that I had to feed him because he wasn't able to coordinate hand to mouth. He felt very embarrassed that he was tipping food all over himself but also didn't like being fed in public as that caused embarrassment too. Ben was sweet natured right through the illness so I didn't have to contend with the passive aggressiveness that many sufferers are unable to control, it must be very difficult to deal with when trying your utmost to do what you feel is best for them. Keep up the good work as he needs you, it's not his or your fault it's the wretched disease!
Sending warm love
Kate xxx
Ps get as much down time as you possibly can by getting outside help if at all possible. x
It is not they do not listen they cannot process the instructions. John has been in a nursing home for three weeks and I have stepped back a little from feeding him every day. Yesterday I was there at lunchtime and one of the Carers gave me a teaspoon and said they had found it was easier using this than a fork or desert spoon. He is on pureed foods now and it certainly helped as he stores food in his mouth and has difficulty in swallowing. Worth a try? Pauline x
Would he accept you feeding him or at least loading his fork/spoon and you don't reload it until he has cleared his mout?. I know it's more effort for you and takes away a bit more of his independence. I managed to get Mum to accept the spoon loading initiall, because she couldn't look down, so she couldn't find her food and invariably the spoon either had nothing on it or was so loaded it overfilled her mouth. Now she needs feeding so the rate of food intake is controlled.
AJK2001 - I have not tried feeding him …..yet. Will save that as a last resort. We always eat together so I'm always right there. I'm sure at some point we will be there.
Dad did the same thing, shovel food in and no amount of reasoning could get him to stop. Full disclosure....he had always eaten that way. Eventually per the doctor's and dietitian's advice we just started feeding him, it was the best and least combative way to control how fast/much he ate. He never complained after that really.
Ron, unfortunately John was always a speed eater as well. Now coupled with the impulsivity aspect, we are out to set world records! So frustrating, but I so appreciate everyone's help and tips.
Hi, I can sympathise with you as sounds similar to our situation. I'm not sure of what help you can get in the US but if you can get someone to come and stay with your husband so you get some time for yourself. As a result of me having surgery recently we now have a carer coming in in the morning to get hubby showered and dressed and then put him to bed at night. It has made a big difference to us. I can meet friends for a coffee if I want, or go for a walk. Hubby has someone new in his world chatting to him about their day etc.
I do hope you get some help. Lots of love, Nanny857xx
I too struggle at meal times with my husband. As you all know, life with psp is an ongoing struggle. Because I’m a retired physiotherapist I started out with a very professional approach but recently I have had to take a less perfectionist approach.
I now have the help of a lovely lady who comes in at lunch time, prepares his food and sits with him slowing him up. He takes this supervision from her much better than from me!
I am then able to eat in peace and as he is much slower than me I can get other things done too. She also reads to him some afternoons while I go shopping etc. Because she is not traine (except by me) ’ I don’t pay her as much as a trained person but more than a cleaner.
Recently hi choking is becoming worse. Because of my training I’m able to help him cough and clear his airways but my help is not so good although I showed her what to do so l make sure I don’t go out until until he has finished eating.
I also remind myself that when I was working it would be no more than a few hours a day and while at work I wasn’t cooking, shopping etc at the same time Also as much as I cared for my patients there wasn’t th same emotional involvement as with my dear husband who has been part of me for over 50yrs So now I take a more layed back approach and if I don’t always remember/bother to give him his nebuliser, eye drops etc etc so be it. Sadly he is dying anyway and so I give him lots of cuddles and just do the best I can at that moment and try not to stress when I fall short of perfection.
Hi, it sounds like you are being amazing and to be able to discuss a "goal" like seeing grandchildren is such a motivator. My father now needs to be reminded about every other mouthful. In order to get his muscles to move he almost needs to be reminded to move. I know this is not positive feedback for you but they do become more and more childlike, not because they are regressing to childhood but because it seems that their brain has forgotten how to make up the connections. Its all there, locked away and you need to unlock it with reminders. It feels like nagging but sometimes a catch a "thankful" look in my father's face because he is struggling to find the right trigger or remember how he did it last time. Sorry but it sounds like its part of the slow deterioration you will both have to fight against. Good luck.
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