Fast progressing PSP and overwhelmed - I am new here

[Boutska]

My husband David was diagnosed with PSP on April 2nd, 2019, previously diagnosed with cognitive impairment in September 2018. Mobility problems began in February and escalated to falls. Since then, he cannot navigate stairs, needs personal care workers (PSWs) to shower and shave him, has difficulty swallowing, speaks rarely and usually cannot finish sentences, cannot do any chores and is only interested in watching TV. David must use a walker to wander around our condo. Without it, he falls, and we have made three trips to the ER in three months, two for falls and one for aspiration pneumonia. I had a chairlift installed for him to use to get up the stairs to our main level.

David calls for my help quasi-constantly, to help him in and out of bed, to bring him things he wants, to help him navigate to different rooms (I keep bringing him his walker), and keeps me awake all night wandering inside the condo and asking for help. On average, i have two totally sleepless nights per week and 3-4 hours on the remaining nights.

I bought an "assist pole" to help him in and out of bed. I have hired PSWs to come four times a week to shower and shave him and get him to walk a bit and exercise. They tell me David is deteriorating rapidly. I cannot leave him alone for fear that he might fall so I rush out to do essential errands (grocery shopping) when the PSWs come to care for him for an hour or two. I have accepted neighbours' help twice to sit with him while I go to my doctor/dentist appointments. I am still shy about requesting assistance.

David has a brilliant mind and that part of him has disappeared. His logic is now severely impaired and he has lost interest in everything that used to keep him busy. We have 30,000 books which he kept listed in detail on his computer. He hasn't turned on his computer in over 9 months. When we met with his favourite friends last month, he was barely a participant in the conversations.

David has lost the ability to wipe himself clean after bowel movements so I clean him up after each one. Strangely enough, David has no inhibitions about this new development, even asking me to come and wipe him... he also seems to pee everywhere but in the toilet while he stands in front of it so I am constantly cleaning the toilet, floor and carpet in order to prevent the bathroom from smelling like an outhouse. I just purchased something from a pet store, designed to remove stain and odour from pet urine. It appears to work!

At the moment, David is sitting in his (new) "lift assist" recliner, watching a movie I found for him. I forgot to mention that I must be present while he watches TV because he cannot use the remote. Yes, I got a special, extra large remote and color-coded the buttons but it didn't work. For the most part, every day and constantly at night before bedtime, he coughs as though he has tons of flegme in his throat and makes disgusting noises that make me want to scream. I don't, of course.

I have had the bathrooms renovated to make them totally accessible and have installed tension bars at the top of the stairs to prevent David from falling down them. David is extremely restless, wanting to lie down one minute, wanting to get up 30 seconds later, same with sitting, standing, going to one room or another. He also suffered from insomnia. The doctor prescribed Trazadone but it didn't have much effect on him. Recently, the neurologist prescribed Quetiapine, which has calmed his restlessness and endless wanderings.

I am wiped out, near burnout from lack of sleep and being on call 24/7, so much so that I fear I might lose patience with David. I have been ordered to ask for respite - one week soon when David will stay in a retirement home while I attempt to recharge my batteries. I know that I must accept it or I will be unable to care for David.

[enjoysalud]

Hi, you do not identify what country you reside. People contribute to this site from all over the world and different countries offer different types of health care and support. I reside in the USA (Los Angeles, CA) where very little health care is provided outside of the insurance that one carries. Such is not the case in the UK, Canada, etc. If you reside in a country where health care is better provided people can guide you on how to access the help. If possible, it would be helpful if you put in the info in the profile of yourself/loved one.

I am sorry that you are seeing progression of the brain disease. What you described as a caretaker, many of us on this site has experienced...the lack of sleep, the worry, the seeming apathy of your loved one, getting closer to the end of your rope. The road we travel. This is a site where helpful suggestions will be extended and where you can rant and rave.

PLEASE, do understand that your loved one's behavior is not INTENTIONAL, but a product of the brain disease.

The more help you can get, the more rest you can get, the more able you will be to help where you can.

Keeping you in my prayers....

a mom who lost her 55 year old son to PSP.

[Boutska in reply to enjoysalud]

I live in Canada

[susantigner in reply to Boutska]

You must take care of yourself. I heard numbers like 60+% of caretakers pass before their loved one. Call on social workers, neighbors, family to help. They want to. I am 62 and my husband with FTD, PSP and CBD IS 63. I can barely take him out alone. And I am physically very strong. Ask also about hospice. It is very different from the old days. Prayers for you!

[salem16 in reply to Boutska]

I live in Canada too. Where are you? My hubby was in nursing home. He passed july15/19. Not too much help at nursing home they send to hospital. If u wish to share with me I will listen. Maybe help me with my loss too.

[Dadshelper]

Welcome to the site. You sound like you need respite care badly to recharge.

Letting us know where on the planet you reside will help in tailoring answers as every country has different ways the medical system operates.

Ron

[rriddle]

Very sorry to read about all that your family is going through.

This seems like a very fast decline even for PSP. Has anyone mentioned the possibility of CJD (Creutzfeldt-Jakob Disease)?

I'm glad you are getting some respite care. You will need it again soon.

[salem16 in reply to rriddle]

Can you tell me more. My hubby only lived 3 years recently passed july15/19

[rriddle in reply to salem16]

You can do a Google search on CJD. It's a very fast progressing disorder that can look a lot like PSP. As with PSP, the only way to confirm the diagnosis is through brain donation. Sorry for your loss.

[salem16 in reply to rriddle]

Even if we thought to do brain donating none is done here in Saskatchewan, Canada. Why is it overseas or the USA? Can you advise people where testing is done?

[rriddle in reply to salem16]

We haven't found any brain banks in Canada that will accept brains from people across the country. And pathology resources in Canada are not so interested in doing the brain recovery. Sadly, we've given up on Canada (except for Lewy body dementia and in one city where a brain bank is being started).

While your husband was living, his physician could've done the tests for CJD. The treatment would not have changed but you would've known the (short) prognosis, if CJD had been found.

[SewBears]

Oh boy, I feel for what you’re going through. There are some medications that can actually make the problems worse. A review of what he’s taking, or not taking, might be beneficial. Do you have a clued up doctor who is helping with his treatment plan? I think you should tell the doctor everything you’ve mentioned in this post. The progression is happening very rapidly and perhaps the doctor can tweak a few things?

❤️ from I SewBears

[Hiking13]

Hello I am so sorry to read your post and my heart goes out to you. My husband had PSP and declined very rapidly too. He had a tracheostomy as he could not clear his throat and that was before we even knew it was PSP. It’s a tough journey and we ended up with 24 hour care at home but it still required me and the carer to do most things and I felt exhausted. My husband passed away 8 months ago and I am only just starting to feel like I am starting to get over the exhaustion. Take all the help you can from anyone that offers and any respite you can. On a practical note make sure your husband tells you his computer password etc before he forgets them as I never thought to do this and we never managed to get on any of Steve’s devices again as he couldn’t remember any of his passwords even for his phone, I ended up with debt collectors letters after he died as I couldn’t pay some bills that were all set up online as I had no paper details, it was another nightmare that I could have done without. Lastly try to have some time with your husband that doesn’t just involve caring for him as it’s all too easy to slip from wife to carer. And really finally I am sending you a great big virtual hug as this is such a hard journey and I really feel for you and all that you and your husband are going through.

Sarahxxx

[LuisRodicioRodicio]

Hi Boutska!

I am sorry PSP has entered 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 am sending you our particular experiences on PSP-RS that we hope you can find useful.

I am not a phisicyan. The information I am sending you through this private mail is a compilation of our own experiences during 7,5 years and also of the people who participate in the PSP chat. The information is made with good will and with the best technical criteria that I could contribute, thinking above all in the guidance and support of the caregivers that, with the exception of the help found in the websites and chats of PSP associations, should be face alone this unknown disease.

The following lines are an advance on the document I am sending you.

"Releasing the PSP caregiver and allowing him/her to have a life outside the home as well as to avoid strong or continuous physical and psychological efforts is fundamental. The main caregiver of a PSP patient is progressively taking on additional tasks. To the person's previous work (before the disease had been shown) must be added the work formerly done by the PSP patient, plus the management of the illness and the guidance and surveillance of people who form the help team. A special and continuous attention must be directed to the main caregiver and his/her medical history.

Remember that the main caregiver jobs and occupations grow along with age. Without significant help it is very difficult to carry out all these activities without suffering a severe wear-down.

Rest and sleep well is essential. Combat stress, too.

The patient often discharges his/her frustration and complaints about the primary caregiver. It is a very hard and discouraging situation but it must be overcome. It is one more symptom.

From my experience and also from my group of caregivers, it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least ten days of holiday each six months are essential,

supposed an effective and intense help with trained personnel throughout all the year.

As Bill F (Smart Patients) said: “As we look back on where we are, we have a wonderful support team of medical professionals, fitness trainers, church folks, nonprofit groups, friends/neighbors, paid caregivers, family members. It's absolutely amazing. Start now to build your team. You will need them, and they'll all want to help.”

As say JEN2017 “nobody could/should go through this hard disease alone. Especially the caregiver”.

Someone in the community of caregivers once wrote “it is not my job to care for my loved one; it is my job to find the best care for my loved one”.

There is always the possibility for the caregiver of losing patience, or not having enough hands for the task at hand. It is then when he attacks the feeling of guilt, unfairly. Be careful.

Finally, reproducing the phrase of Anne Heady (active participant in PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"

I hope and I wish these notes are useful.

"

Hugs and luck.

Luis

[Katiebow]

I really feel for you Boutska , it's so tiring being 'on call' 24/7. When Ben was at this stage I did have professional help/care to give me a bit of time to myself. I always found I could not ask friends to sit with him whilst I nipped out to see friends etc due to the probability of him needing personal care/feeding, a big ask for them and Ben. I did have a volunteer lady (we have now become friends) who sat with him whilst I gardened or went to have a sleep upstairs, she called if I was needed and that worked well, I guess friends could do that too, just depends how comfortable they are with being left in charge. Just try to hang on in there, difficult as it is, I always thought about if the boot were on the other foot and that makes you realise how important your care is for him.

Hugs

Kate xxx

[Nat08]

Bless you and Bless me as i know exactly what u r going through.. its a 24hr job. I look after my dad who is bedbound and cannot speak although he understands everything you say to him. He now has a catheter as i could not cope with keep changing him every 5 mins and also the risk of his skin breaking down due to amonia in urine. I too get a little impatient at times...but then i quickly remember my dad as he was and i know he would not ask me to hel0 him with any of these things...wiping his bottom etc he needs me as i needed my parents when growing up. This disease is cruel....bless us all

[jamesmoffat]

You must care for yourself in order to help David

[StayAtHomeDaughter]

I am so sorry.

It's okay if it is too much. It is too much. Praying the respite recharges your batteries and gives you options for your future.

It is too much. No one had any idea until the disease came their way. Seriously, did any of us know?

[raincitygirl]

Dear Boutska,

I am in Canada too, and lost my husband last year to CBD. Your husband sounds like he is in rapid decline. I totally empathize with your exhaustion, frustration and grief at the loss of the husband you once had. It is sh__ty and totally unfair to all concerned!

I suspect you will not be at this stage too much longer.. I thought my husband was about half to two-thirds through the course of CBD when he died. It shocked the #@%* out of me, I can tell you! Still, in the moment, when you are caring, the demand seems to last forever. Take every advantage you can of respite (when the Community Health (BC) nurse told me about my eligibility for respite I just about cried - it was so good, just to know it was possible!)

You are seeing your husband through the last year or two of his life now: take care of yourself so you can make it as good as is possible given the unfortunate circumstances.

Hugs for strength XXX

Anne G.

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[salem16]

My husband not to that point in senior home thank god. I feel for you. He got aspirational pneumonia died July 15, 2019. His 66 birthday today. My daughters and I totaled today. As least his suffering ended. I feel soon you have to have nursing home or your health break down. Keep in touch. Hugs.

[salem16]

My husband Adrien was in nursing home for approximately 3 years. When the swallowing issue went bad we in process to get feeding tube. Sadly nursing home lack on this. He had fall we in emergency early July er doc knew what it like approached me to let him go. My daughter and I power of attorney. It was tried to help him told too much oxygen used let him go. My daughters made the decision I would not. Took 8 days no food or water it tough to see. I am still not myself. Even the so called pain pills not ease it. I still have nightmares. It a horrible disease. Here In c anada no research done so sad.