Letting go

[Birdman34265]

Hi ,as I sit here alone,it's something I have to get use to,my Kathy in her Fourth year of psp is in hospital waiting for a bed in a rest home,in Napier NZ there is a shortage or rest home beds in hospital level care.a week ago after repeated blocked catheter and a fever and discussing with district nurse we called the ambulance, Kathy is ridged in arms and neck , eyes are fixed , can't speak ,gives hand signals,she had a big seizure for 12 hours non responsive but breathing.shes stable now .I go to hospital twice a day to feed her, people tell me I have done a good job ,but they don't know the stress mental and physical you go through and now my body is adjusting it self, Kathy shows great courage ,never complained ,I don't know how much time she has left I hope and pray she doesn't suffer.bless you Peter

[Yvonneandgeorge]

Thinking about you both, my heart goes out to you, sending you a big hug. Yvonne xxxx

[Birdman34265 in reply to Yvonneandgeorge]

Thanks Yvonne

[enjoysalud]

Yes, you have done a good job. Remember that!

My son was 55 years old when l lost him to PSP. He asked to NOT be fed following 5 weeks of having a PEG installed (following 2nd bout of aspiration pneumonia), and realizing he was on a steep incline. He too had a seizure that put him out for about 9 hours. He too suffered all the challenges that PSP brings (bed sore, speech that has turned to gibberish but yet still able to communicate with gestures and thumb, sight almost completely gone, inability to move, loss of all his bodily functions, needing help with everything, etc)

Just hold your wive's hand and tell her how MUCH you love her, how much she had added to the joys of your life, and how grateful you are that SHE was your wife. You will miss her, but will be grateful when her suffering is gone. She will always be with you in your heart.

Los Angeles, CA, USA

[Birdman34265 in reply to enjoysalud]

Thank you,the separation will be tough,I have to go on

Peter

[Hidden]

Bless you too Peter!

Sending you & Kathy prayers & hugs... Granni B

[Birdman34265 in reply to Hidden]

Thanks Peter

[Dadshelper]

Sounds like you have done everything you can and now it's time to let someone else do the work. You'll still have a very active role overseeing her care as you are her spokesperson.

Ron

[SewBears]

I echo what everyone else has said. As you move through the fog of the next chapter(s) please keep coming back. You aren’t alone when you visit with us. We’re here for you even if I’m at a loss for words. My heart goes out to you and Kathy.

❤️from I SewBears

[honjen43]

My love to you both! I am so sorry to see your post, but not surprised.

I am pleased I was able to meet you both earlier in the year. I knew a post like this would come sometime.

Peter, you have done so well looking after Kathy. Now is the time to learn about stepping back and letting others take more of the caring role, and for you to be more of a husband to Kathy.

Yes, I know it is hard, and you feel no-one else will do as good a job as you have done.

Do as much as you are able. Talk to Kathy and see if you can read her wishes. Decide between you how to manage for the future.

Ask for Palliative Care and Hospice to be brought into the picture. They will have an understanding of the stage that Kathy has reached, and may also be able to give you some support, Peter.

Ask for a single room if that is what you both want. Get her as comfy and settled as you are able.

Make time for moments, ones that are just between you both, no chores, feeding, etc. Hold hands and just be together!

Kathy, I am thinking of you and I am praying for you. You have lost so much - but you are still able to control what happens next.

Get your communication signals working and show Peter what you want to happen.

I hope you will not have too long to wait for a bed in a nursing home, one with good care, a good view and some sunshine.

My love to you both. Phone or PM me if you want to let off steam, or talk something through. I have stood in your shoes.

Big hugs to you both!

Jen XXX XXX

[Birdman34265 in reply to honjen43]

Thanks Jen , her doctor refused her palliative care saying she didn't qualify ,I am looking into this.hope I can sort it out.

xx Peter

[honjen43 in reply to Birdman34265]

They refused my guy too! I think they just dont understand the disease!

There is a set of guidelines for palliative care. I found them recently when next door neighbour suddenly in hospital. Will look for them tonight.

How are you both managing? It's hard enough managing everything without having to get up and down to the hospital, and thinking and wondering! Make sure you eat!

Hugs to you both

Jen XXX XXX

[honjen43 in reply to Birdman34265]

The set of guidelines is called "Referral Criteria for Adult Palliative Services in New Zealand". It lists 5 criteria and patient has to meet ALL of them.

I think Kathy meets them all, so start fighting for care for her! I was told my husband did not qualify as he had more than 6 months estimated to live. Now I look at the criteria, I think I should have shouted long and loud! No-one ever suggested palliative or hospice care to us. And if they had I would have been more prepared to fight.

Talk to Palliative staff/doctor. Ask for referral to them!

I am not sure which of your Drs refused palliative care, whether GP or hospital ward Dr. Our ward Dr was not at all tuned in to our health problems! So go beyond him/her. They may think they are top of the heap - but they are NOT!

I know all this will be exhausting for you (Been there!) but if you can achieve that top level of care, it will be so worth it, and you will be able to relax and just be with her

Hugs

Jen XXX XXX

[doglington]

I know how hard it is. My thoughts are with you both. It's so cruel but you have done your best.

Big hug and love from Jean x xx

[Birdman34265 in reply to doglington]

Thanks Jean

[Dance1955]

It’s horrible isn’t it I wish they could find a cure

Bless you 💐

[Birdman34265 in reply to Dance1955]

Thanks,the worse part of psp is you know what's going on but can't move or speak .x Peter

[Hiking13]

Thinking of you both this is so hard for both of you. Stay strong you have done all you can so just keep doing what you are doing. She will know how much you have cared for her and when you can get rest and time for you Thinking of you

Love Sarahx

[Birdman34265 in reply to Hiking13]

Thanks Sarah

[Katiebow]

A truly terrible time for you both but you have done all you can to keep her safe and loved, I'm sure she knows that as did my husband. Thinking of you both and hope that when the time is right she will peacefully slip away.

Love Kate x

[Birdman34265 in reply to Katiebow]

Thanks Kate

[Hidden]

It’s a relentless disease for patient and care giver.

[Heady]

My heart goes out to you Peter. You have done everything you can. Now it's time to go back to the most important job, being Kathy's husband. That's all she wants and needs. Anyone can do the physical side, only you can hold her and tell her you love her.

Sending big hug and much love

Lots of love

Anne

[Birdman34265 in reply to Heady]

Thanks Anne, the last week my body is regaining energy after more sleep,it hard being alone.

[AJK2001]

Thinking of you both.

[Cuttercat]

Please take care. Both of you have been through so much. Hold her hand and love her. Bless you.

Cuttercat

[Birdman34265 in reply to Cuttercat]

Thank you

[catherine_h]

The thoughts and emotions are exhausting. I hope you find moments that make you smileand recharge you to go again. may the while go easy on kathy and yourself. she is lucky to have you by her side xx

[AK731]

Hi Peter just been there with my husband Ken who had PSP for 7 years. He was home till the last month. Had to take him to hospital with bedsores. Only then did he get palliative care. Hospital a week and then nursing home for three. NH were marvellous with their palliative care. Be strong talk to your wife, play music to her, read to her, just be there. You will have your memories and friends. Love to you both. Pat

[Jimjam22]

Sending love and hugs your way xxx Julie