Carer to my husband diagnosed with PSP - PSP Association

PSP Association
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Carer to my husband diagnosed with PSP

5-4-3-2-1
5-4-3-2-1

Hi I'm Karen. My husband was diagnosed with PSP in May16. To date he has deteriorated to a point that he is 99% bedridden. His speech, sight, mobility, ability to swallow is very affected. Carer from Mon - Fri 8-4, rest of the time I care for him. I also work full day. I'm bone tired!

49 Replies
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Greetings #s, Sorry to have to welcome you to this site, but you will find it a wealth of information. And if all you want to do is whine, well you've come to the right place for that as well! We are all struggling with PSP, a few with CBD and many who were once diagnosed with one thing (Parkinson's) to find out they have soemthing a bit more fierce, PSP. Most of us are carers but there are quite a few who have the dreaded disease.....I myself am a carer from the US. My husband has had PSP since '13. He is much in the way of your husband though he does transfer himself from bed to chair in the day. and can walk for exercise when well supported. I was a teacher in my prior life (pre psp) but I could not do both and thus quit at the end of the school year in '13. So that's some of our story. I have found so much comfort and information on this site I hope that you do too. I also find that faith in God gets me through makes my low times a little more beareable and my high times really something to be thankful for. I encourage the same for you; take faith in God pray daily for strength and courage and answers and when the good days are good be thankful to the One who got you through it one more day. Again welcome keep us posted

AVB

We are troubled on every side, yet not distressed ; we are perplexed, but not in despair; persecuted, but not forsaken; cast down, but not destroyed II Corinthians 4:8,9

Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need. Hebrew 4:16

Be of good courage, and he shall strengthen your heart all ye that hope in the Lord. .... Psalm 31:24

Welcome to the site, we are all trying to be good careers, does not always work, because we are so tired, my husband has had PSP since 2015 been a very hard few years, without these lovely people I would have given up a long time ago. Big hugs to all of you Yvonne xxxx

Yvonne you might wanna make sure your message gets to 54321. She'll probably read your msg. but it was sent to me!

avb

It looks like it had gone to 543321 , how are you? Xxxx

Well I just told Robo1 that Bruce has a UTI I think.... they still haven't pulled a culture though I called about it Friday, then again on Saturday and when they came out yesterday they had to get permission from the drs office who said no lets wait.....so we waited and now B is in alot of pain.....I'm just a s angry at myself because I didn't tell them what to do .....if I had done that, We would have antibiotics in the man by now....dagnabit!

AVB

George has a urine infection again, but we keep a spare supply of antibiotics at home, so if I think he has an infection I start them, which we did xxxxx

See I have some drugs than I'm about to start him on. I have been waiting because I keep thinking other things are going to be provided and too I don't want it to clear up with the four tablets I have and give a false positve !...I'm going into panic mode....Do you think I should give him a dose of antibiotics they are strong....1 every 12 hours!

AVB

Yes if you think he has a urine infection, yes, you know him better than anyone else, I can also test his urine, brought the testing kit of amazon. DN said if you think he has a urine infection give him the tablets , it will only get worse if we wait. Yvonne xxxx

True that....thanks see....we take care each other!

ok i;m going in!

Keep us updated xxxx

easterncedar
easterncedar in reply to abirke

Be careful. Developing resistance to antibiotics can be fatal.

abirke
abirke in reply to easterncedar

Well listen to this ec! I try to let my husband have his morning bathroom time privatly....I help when needed. Each day he has his morning constitution....at least thats what he tells me when I ask him suspiciously ....you know what I mean , You can tell when soemone's pooped....even if it's not stinky there's aromal evidence! And he down and out misled the nurse when she queried. So I told him to tell me the truth, when was the last time you went......he finally told me.....6 days ago!

STUPID ME! why did I not read the signs. Well I did give him a laxative on Friday night...that's when he started having pain so I figured I made the cramps on Friday//He never went on Saturday

Hbut now that its' been 5 days .......And it's been more than 6 days because I gave him the laxative after days of him not having a complete bowel movement.....he lied to me about "it's only been 6 days" hmm well I am going to call his home health nurse who can only do that which is ordered by the dr. So we will see.

And yah i was very reticent about giving him my penicillin but when I heard how long it was going to be to get his and his fever and pain,had to do something!

Fun Wednesday already!

AVB

easterncedar
easterncedar in reply to abirke

The nurses at the VA swear by suppositories, and I guess I am going to have to go that route.

abirke
abirke in reply to easterncedar

i called home health....milko magnesia....so we'll try that first! is yours stuck up too..i'm sorry...I know diarrhea is worse but to hear him moan , he sounds like an old wooden ship!

5-4-3-2-1
5-4-3-2-1 in reply to abirke

you make me smile.....

Cuttercat
Cuttercat in reply to abirke

Funny how we all live for these things. ie: did you have a BM today? Did you Pee enough.

Gosh darn.

Cuttercat

abirke
abirke in reply to Cuttercat

hahahahaha I know! Oh the problems we have... the lady who is being nominated for Education Secretary , When asked if she had donated to the republican party the number 200million dollars came up ...."that's possible" was her reply..... How droll....When asked if they pooped or peed in satisfactory quantiities our loved ones reply, "that's possible" how exciting! Quite frankly, I would rather deal with the real shit.....oops!

;)

AVB

5-4-3-2-1
5-4-3-2-1 in reply to abirke

whahahahahahaha!!!!!!!

5-4-3-2-1
5-4-3-2-1 in reply to Cuttercat

have you had a motion.....

abirke
abirke in reply to 5-4-3-2-1

?

5-4-3-2-1
5-4-3-2-1 in reply to 5-4-3-2-1

having to enquire every day whether there was a motion/movement :-)

5-4-3-2-1
5-4-3-2-1 in reply to abirke

Good luck for you!!

abirke
abirke in reply to 5-4-3-2-1

U2

Thxxx Yvonne xx

5-4-3-2-1
5-4-3-2-1 in reply to abirke

Thankyou abirke! I am still trying to find my feet with this dreadful disease!

abirke
abirke in reply to 5-4-3-2-1

Welcome to the club

Hugh hugs, we on this site know how you feel right now. I don't know how you manage to work as well,can you get more help or compassionate leave from work now and then, lower your hours??? Anything to help ease the burden , would it work out cheaper to get live in carer or / and would you be eligible for CHC funding. Contact a carers association if you can, you MUST get help, don't wait for meltdown. Keep us all informed , we will all be routing for you .xxx GW

Hi Gypsywoman, We live in South Africa. I think aliens are more known here than PSP. I tried to apply for ex gratia funding through my medical aid but it was turned down. I had to take in a border to cover the cost of the carer. I have a bit of capped leave due to me which I will have to look at for sanity's sake. Thanks for all the support xx

Hi Karen, you have come to the right place here where you will find advice/information and most of all support from a lot of carers who have a wealth of experience. Also we have those who have PSP who guide and give us an insight as to how they are feeling.

Your husband has deteriorated very quickly. I feel so lucky and privileged in that my husband was diagnosed in 2014 but his PSP is progressing very slowly. His eyes are sensitive to light and he has some difficulty with his downward gaze, he walks/ shuffles along very slowly and his speech is slurred but other than that he fine.

Can you reduce your hours if unable to stop completely. You need to take care of yourself so you can look after your husband. xx Nanny857

5-4-3-2-1
5-4-3-2-1 in reply to Nanny857

Hi Nanny, I work at a TVET College in SA - have been with them for 23 years. I will have to speak to the principal but I do not have high hopes!

Does your husband suffer anxiety attacks? My husband get major anxiety attacks and he is also very depressed. He lives for his tranquillisers and sleeping pills!

Nanny857
Nanny857 in reply to 5-4-3-2-1

Thankfully he doesn't get panic attacks. He is very tired all the time and has a terrible thirst at night, this gets him down at times, as he can't understand what is causing this, he tells me he is not depressed. We've made an appointment with GP for next week so will see what he says. xx

Hi Karen,

You sound in a very similar situation to us - my husband is now completely disabled, hoisted everywhere, does not speak and cannot see. And in October we gave in and had a PEG fitted for feeding this is along with the supa pubic catheter he already has. My husband was diagnosed over three years ago but he is still only 56.

Until 18 months ago I was juggling like you describe, but then it all got too much and I have taken a carer break.

If you would like to talk further send me a message, and I will explain to you how we have financed this move on my behalf.

Take care

Sharon

Thank you Sharon! I so much appreciate any bit of information you can give me!

How old is your husband, ie pre retirement?

My husband resigned his job in 2012, age 53 - in hind sight I am quite sure that the disease must have started then already. It was an impulsive decision and he could not cope with the stress and pressure anymore. He will be 58 in April.

5-4-3-2-1
5-4-3-2-1 in reply to 5-4-3-2-1

He used to work for ABSA Bank as a consultant. After his resignation he started another job (debt collecting), but was asked to leave, reason being that his people skills were not up to scratch. If there is anyone with thé best people skills then it was my husband - he was loved by male and female alike! I was told that their social skills go down the drain with PSP....

We managed to claim my husbands pensions - due to critical illness. And we had life insurance that also paid out for critical illness, although the insurance was actually in case of death and not critical,illness - they still paid out after pushing.

With him resigning obviously there was no pension. He did, after numerous reports from the neurologist, receive a small amount from an insurance policy that he had.

Sharon how does your husband cope with depression and anxiety. Bartho, my husband, gets quite severe anxiety attacks. He lives from pill time to pill time and gets quite anxious if he is not given his tablets on time. He keeps on reminding me to not forget to give him his tablets.

Is cannabis oil an option for PSP

Karen,

Paul has been diagnosed as also suffering from 'severe anxiety disorder' which means that he gets really scared - things like he has to have the sides on the hospital bed up all the time and when he is scared he will cry. Really, really distressing all round.

Paul hardly takes any meds, he did have something for depression at one time but it didn't really make much difference so we stopped.

What part of the country do you live in? We see an amazing professor at Addenbrookes hospital who has been reAlly supportive and come up with some really good novel ideas.

I'm in South Africa!!!! About 50 km from Cape Town

Hello, Karen. Welcome.

You are young to have all these problems.

My husband was diagnosed 2013, his 80th year but I realise there were symptoms years earlier. One of the things you will soon realise is the variation in the symptoms, especially emotional. Some have great anxiety, others, like my husband, become very detached and apathetic. Inevitably they become very self-centred.

The loss of the person you knew is hard to bear.

love, Jean x

5-4-3-2-1
5-4-3-2-1 in reply to doglington

Dear Jean, thanks so much for your reply! I must admit that my husband used to be a tiny bit selfish, but now-a-days he only cares about himself - impatience is at the top of the list! I cannot run fast enough to bid his commands! It is extremely tiring and it is no use discussing it with him - he listens but I don't think he really cares!

I don't think I have as yet fully admitted it to myself that he is never going to be the same anymore...

doglington
doglington in reply to 5-4-3-2-1

That is so difficult. It keeps hitting you.

x

Karen,

I can relate ...wife of 46 yrs has been diagnosed for 2+ yrs with PSP had it for at least 2-3 prior yrs ...I am the only caregiver .1 son and family close but they have their own lives ...He comes by for an hr or so 1-2 times a week and we see each other for dinners /holidays etc. Other son in Idaho /we are in Denver area ...see Him couple times a Yr ...hes 900 miles away .My wifes symptoms are very much like your husbands ...speech, sight , swallowing ,and a turned out right foot. She can barly walk ...but refuses to use walker or chair .I am her "guide"...I am 67 and am a full time giver....not a problem ..but I have no problem sleeping at night ...She also sleeps well ...I am lucky in that dept...she takes very little medication . 20 mgs of prozac in the am and 7.5 mgs of Mirtrazapine to sleep at nite ....she sleeps from 9pm til 5am and then goes back to bed til 8 am or so ...I get her up to use BR. We have had a brace made to flatten her foot out and take a slow short walk (hand and hand ) almost every day .....snow has stopped us 3 times this yr but I sort of make her walk ...she needs it ...I cook clean bathe and dress my wife ..and I am also bone tired some days ..I have found a person to clean every 2 weeks (big stuff) floors Br's,vacumn and dust ...etc I still change beds and wash cloths . I would much rather be doing this than sorting things out with-out her ...just my perspective ...hope it helps in your daily grind ...you are not alone .....J

5-4-3-2-1
5-4-3-2-1 in reply to enzo501

Thank you so much! God bless xx

Hi Karen. There is no doubt that the general lack of knowledge about PSP and CBD among the medical profession is very frustrating. My advice would be to contact either the PSP Association in Britain or Cure PSP in the US and ask them to send you their literature. A lot of this material is aimed at the pofessionals who are supposed to be supporting you, including your carers. When my husband was diagnosed with CBD I handed information to everyone wbo would take it and I found that all of the professionals were only too happy to further their kowledge on the subject. I feel it is our responsibility to educate others as it would seem that no one else will do it. I try not to look too far into the future and just deal with today as none of us knows what's ahead of us. Take care of yourself and keep in touch with this site as there are people on here who can pass on to you very valuable advice.

5-4-3-2-1
5-4-3-2-1 in reply to Pentland

Thank you! I so much appreciate all the advice I can get!

Sounds like me!!!! Welcome and know we totally understand. You will find support and care here.

Cuttercat

Do you have access to Marie Curie night sitting service? Helped our family through really touch times.

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