CBD-How do you cope?: I hope everyone has... - PSP Association

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CBD-How do you cope?

Mikey12345
Mikey12345

I hope everyone has had a nice Easter. I'm having trouble dealing today. I was leaving the nursing home, leaving Michael in the company of his cousin for the afternoon so that I could spend the time with our children and grandkids as they reminded me that I still have a family other than dad. When I told him I was going to our sons, he said "Am I going too?" It just broke my heart. I didn't want to leave him. It's not fair that I can go and he can't. Then he said he's going to get better so he can go home.

How do others process this in your own head? I just wanted to stay with him and not go. I feel devastated, helpless and hopeless. He was so hurt that I wasn't taking him with me. He is hoist transfer, can't stand, doubly incontinent, hallucinatory and sometimes aggressive. Although he was quite clear in the above statements, most times he can't be heard or understood. I'm just so very sad tonite. Can you relate?

32 Replies
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Your post breaks my heart. I wish I had the right words to comfort you, but unfortunately I do not. Please know that you are not alone and I will include you in my prayers tonight that you may find the needed strength and peace to help you carry on.

Sending you many hugs, Alice

Thanks Alice. It helps to be able to share with others who have been through this and prayers are wonderful.

Dear Liz,

I can relate - Even though my husband is not yet as disabled as yours. The dementia that comes and goes is another whole level of cruelty on top of the physical disability.

I don't have any special wisdom. The only thing I can do to stay sane is to use logic to remind myself that what I'm doing is in the best interests of the best care of my husband, and show him as much love as is possible. If he asks for something that isn't going to happen, I tell him "No - I'm sorry but that wouldn't be safe - and I love you too much to risk your safety" At this point, my husband understands that - he isn't as far along as yours.

So, feel the sadness - but love yourself for being a faithful, caring, loving spouse who will see him through to the end. You are wonderful :-)

Anne G.

Anne, thanks for sharing the response you say to your husband. It's a common sense statement which evaded my brain. I will use it next time and see if he understands. I would be afraid that even our strong sons could not handle him out of his current environment. The guilt comes in because I didn't try.

Thank you for your ever present words of wisdom.

Hugs, Liz

Hi Mikey12345, you do the best you can, as you are doing!

Yes, it is hard when your love is tied to hospital care as he can't move etc.

Had similar comments that came from my love. He so wanted to go home! But had to tell him that was not possible.

Try and bring family and friends to him at the home so that he does not feel cut off. He may not remember, I know.

Other thing I did was to take in photos of family and events. Keep his memory alive and remind him of happy times. We had a few 'chocolate moments' too!

The dementia is a problem. I could never be sure sometimes where my love was but sometimes I had a glimpse of the young man I fell in love with!

You can never be sure what you will find on each visit. Tell him you love him, and perhaps lie a little and say 'Not this time' or maybe 'Next time'.

Yes, it breaks your heart, but you have to put on the smiley face each time you visit. Make sure you hug and kiss him!

Thinking of you!

Hugs

Jen xxx

Mikey12345
Mikey12345 in reply to honjen43

Jen, thanks for sharing your experience with me. We did the "chocolate moments" before I left yesterday. He enjoyed that!

The pictures you took in were of past events where he was present, I assume. Did they make him feel better?

I will have to talk with a couple of the kids to visit more. They have not been coming more than one hour a month which I'm sure hurts their father. I understand it's difficult to see him like that but you go anyway for dad's sake.

I have been doing the little lies. Usually I say "not today", or "as soon as you can stand up." It has pacified him in the past. I think my state of mind yesterday may have been worse than his. I felt so bad leaving him but quite possibly he may have been ok. Not sure.

Most days I can put on the brave face but lately my eyes seem to be leaking on their own will.

Thanks Jen!

Liz

honjen43
honjen43 in reply to Mikey12345

Hi Liz, yes it is difficult to get family to visit. They don't know what to expect or how to deal with the emotions. My husband was in a similar situation to your dad for a while. Sitting in a chair they seem no different!

I brought photos of our wedding as our 50th was imminent and in both our thoughts. It helped us to communicate without words!

Our family and grandkids visited a few times and think they were happy they did. They knew he was not the same but each found a similarity to relate to. The youngest said he still tickled her after their hug! One of our boys came alone, not unexpected, and was the one who could remain with his dad and talk and ask questions and was the most relaxed. The quiet ones always surprise!

So give them all that 'talking to' and tell them they must come more regularly because it will make their dad/granddad happier. Get them to bring cards, flowers, stories/pictures of what they have done, or drawings for him. This will remind him that they have been and are still in his life.

You will no doubt have tried all you can to get them to come!

My comment to myself when things were tough or there was no spare time, was 'can you live with yourself after this is over if you don't do this now!' It has worked for me now it is over.

Do your best to persuade them all it is so important and will not be for a long period! They need to know this!

We all understand how frantic you feel at this time. Hope you have success in delivering impetus to the derrière when it is needed!

Big hugs!

Jen xxx

Mikey12345
Mikey12345 in reply to honjen43

Lol. Thanks for the laugh, Jen.

It's my hubby who has CBD and our 5 adult children who struggle with acceptance. Two of the boys avoid seeing him and when they do they use the buddy system and take a sibling with them. No one likes to visit him without another family member present. I get that but you just go anyway.

I like the idea of bringing pictures of their latest project. One son visited on Easter and brought pics off how he is redoing his garage. Michael seemed to like to see that.

As you, I keep saying to myself that I don't want to regret not doing something so try to keep on going.

I will give them "the talk" again with more emphasis!

Thanks so much for your time and wisdom.

Hugs back,

Liz

honjen43
honjen43 in reply to honjen43

Apologies for senior moment!

Feel for your sons! It is difficult to visit a dad who is different, in hospital, and they are not sure how they should talk to him. My 3 boys all visited and in general, my love knew them, but the youngest he seemed to have 'forgotten'. There was an instance when he asked how his 2 little boys were - and I had to explain to him that they were grown up and that there were 3! Then he did not recognise the youngest at all. My son took it in his stride and told him who he was, and went on from there.

Explain that their dad is still there, but his brain has closed a few doors. But they are not locked and they can make them open again by visiting and renewing the memory. And that they need to do it before the door is locked!

Hugs

Jen xxx

Mikey12345
Mikey12345 in reply to honjen43

Well put! I think I'll use your words. Love the door analogy. Michael still remembers everyone so far however he did refer to the youngest as his stepson, which he is but has always been called his son.

Hugs, Jen.

Liz xxx

Hi Mikey.

Yes I can relate, and my heart aches for you going through this.

My dad has been in a nursing home since July 2017, and until October 2017 he was very angry, aggressive, agitated and blamed us. He was adamant he would not be staying in the home and would be well enough to come home one day. He used to say things like "I'll be good I promise" and "I won't move, I'll do exactly as I'm told". He used to fight us so hard, So much so that he started to fight us via the legal system, appointing an advocate to take it to court.

In October 2017 however a visit from the Neuro nurse finally enabled him to see the truth and it was heartbreaking. He finally understood the full impact of his condition and what the future held for him.

At this point we were still able to get him out and about (briefly) in his wheelchair. But since Christmas we have been unable to do this. He is immobile and we can no longer get him in and out of the car. However when my brother came to visit last Saturday dad became very agitated and expected my brother to take him out. He wanted to go to the pub. My poor brother had to explain Why they couldn't take him knowing full well that they were going to take my mum out for a well deserved drink after visiting dad. Dad became so agitated his body became very rigid and he had some sort of choking/breathing episode and the nurses had to take over to help calm him down.

Sorry for the long reply but I guess I just wanted to say you're not alone. It's heart breaking (I seem to use this word a lot but can't think of any better description) however I don't know what to say that will maker easier.

Much love and support x

Oh my, Martha. The experience with wanting to go to the pub must have been heart wrenching!

Michael has not wanted to know the future with this disease. I'll have to consider the pros and cons of telling him. It certainly would be easier for me if he understood.

I love reading short or long responses. I get more from this site and all you caring people than anywhere else. Thanks for being here.

xxx. Liz

Of Course we all understand. It is heartbreaking. The only thing that got me through days like you are having, is reminding myself that the kids are right. You do need to remember you have other family and you need to spend time with them, for your own sake. They have to be able to look after you, give you some TLC. None of us can get through this journey without family support, to maintain our own sanity and you have to have that, if you have any hope of giving your husband the care and love he needs. You taking a break, is the best medicine your husband can have, because you come back (or you should!!!) relaxed and rested. Any guilt feelings will distroy this, therefore detrimental to Michael.

So ditch the guilt NOW!!!

Sending big hug and much love

Lots of love

Anne

Mikey12345
Mikey12345 in reply to Heady

Wow. Great message. Thanks. I needed that. I will try hard to follow your suggestions.

Very grateful,

Liz

Liz my husband didn't want to know about what was going to happen to him, he was just too scared. To be honest I can understand that too. It's not great is it? He did realise he couldn't walk anymore however, and that meant he couldn't go in a car.

However on New Year's Eve 2016/2017 l had a phone call from the home he was in. The carer told me that my husband was very upset and breaking his heart crying. That had never happened before. I spoke to him on the phone and managed to calm him down. I told him I loved him and would be going to see him the next day. He wanted to see me right then. Apart from that I had no idea what he was saying. His speech had almost gone and because he was crying so much it was impossible to understand what he was trying to tell me. I told him it was really late and I was going to bed as otherwise I would be too tired to see him the next day. He calmed down then as he wanted to see me next day. I often wonder was he just lonely and wanted me there or was he afraid. Or was it something else? I will never know, and sadly that's how it is for us and the ones we love. It is such a cruel disease. I don't suppose that has helped you much but my heart goes out to you and to your husband.

Oh and yes do get your children to visit him more often. It is not fair to you or your husband. I hope things are better for you tonight and tomorrow.

Hugs to you.

Marie x

Mikey12345
Mikey12345 in reply to Marie_14

Thank you, Marie. Your sharing really does help as it tells me I am not just feeling sorry for myself, that others have felt the same way. Such a sad New Years Eve for you but a great response you gave him.

I, too, wish I could understand what Michael is trying to say at times. So afraid I will miss something important for me to hear. You're right..a very cruel disease.

Thanks so much.

Liz

Hi.

I am so sorry that you are feeling so sad today. Nigel has CBD too and he also cannot understand when I have to do some things without him but you just have to do it. What I have done before is to get the children/grandchildren to drawer him a picture or write a little note so when I get back to him show him that we were all thinking of him.

In the meantime I am sending big hugs and praying that you will find some peace in your mind.

Love Ali B xx

Mikey12345
Mikey12345 in reply to AliBee1

Ali,

Thank you for the suggestion. I Love it.

Liz

Hi there, boy oh boy you sound just like me, Leon makes me feel so so guilty, I took today off 1st day in 6 weeks since he went into care and I still feel so so bad. But like you wanted to spend time with family, travelled 7 hours there and back to do so. It is a cruel situation that us as carers are put in. Hugs to you, this site keeps me sane

Marg H Barnawartha Vic Australia

Mikey12345
Mikey12345 in reply to margh2468

Thank you, Marg. Sorry you are going down this path as well. It certainly is cruel and wouldn't wish it on anyone! I feel less alone because of this great site and all who share.

Hugs,

Liz

margh2468
margh2468 in reply to Mikey12345

Most definately helps immensley

Hugs for a better day, if there is one xxoo

Completely understand we placed Mum in care in feb and she wants to come home with us every day. She had 12 visitors on Sunday and then we all left her to have tea together.... felt so guilty but your family are right you need to spend time with them also sending hugs as I know it’s so hard x x

Boy. I sure can relate. My husband while in the nusing home with his PSP, told me "I'll sleep on the floor so I won't fall out of bed if you will let me come home with you today". It broke my heart. I

My husband with PSP is in a small care home and in similar condition, completely dependent on others for his care, 2 person transfer, incontinence, etc.. We were able to take Easter to him. Our two children, their significant others and our grandchildren brought KFC, fruit, salad, cake and ice cream to the home, we took him out to the patio and had a picnic. We even celebrated a birthday at the same time. It was a lot of work bringing table and chairs, but well worth it. My husband smiled the whole time even though he can't talk, he seemed to really enjoy it. I am so grateful that my children are willing to do these things on holidays.

If something like that is doable at the home where your husband is, could you try that on the next holiday? Or, don't wait for a holiday, just pick a day and plan it. It will give both of you something to look forward to.

Wherever I can, I try to turn this lemon into lemonade. It doesn't always work, but this time it did. I have my sad days too, but it's amazing how much even one good day helps my attitude and his too.

Hi Liz

Emotionally this is a tough one.

I'm so much in agreement with the other posters here.

When I first left Liz in a nursing home it felt like abandoning her. Like loosing her too.

I tried to console my self intellectually that her care needs were beyond home care.

However as I began to see she was getting better care in the home and as I began to recover from a few years of 24/7 care we began to recover our relationship on a better footing.

Now I rack my brains for things to keep her involved. Each visit I give her family news, news of her moggie, show her photos and videos of the garden and ask her preferences for planting. I hug and kiss her a lot and stroke her head and read to her. Chocolate eating is on the agenda most days. I take her fresh fruit juices and help her drink them and finally I ask her advice on the domestic decisions.

We are closer now than we have been for a while.

There are no answers. I tell myself this is the way it is and I must accept that and do my best to make it as good as it can be.

And yes, when I get home it is to feel the absence of her.

Warmly

Kevin

xx

Mikey12345
Mikey12345 in reply to Kevin_1

Kevin,

What is a moggie? Haven't heard of these in Pennsylvania.

You sound like you have mastered the visit. Love what you do for and with Liz. I bring some foods but have to be careful they don't cause a GI reaction which has happened. I do tell him what's new in the family as long as it is good news. I don't tell him anything bad or anything that costs us financially as he worries to the extreme and hallucinates. Don't want to fuel those fires. I'll have to take more photos.

You mentioned pictures of your garden. Do you really have time to do gardening? How long do you spend with Liz each day, if you don't mind my asking?

I come in to Michael about 11 AM and stay til about 5:30 after his dinner. By the time I make stops where I need to, I get home, eat and I'm exhausted. Wonder if others have a better schedule. It seems I have to squeeze time to pay bills, etc. once in a while.

I love when you share. You sound in total acceptance and are so knowledgeable about Liz's disease. Thank you for sharing your experiences with us.

With gratitude & hugs,

Liz

Hi Liz

Sorry - A moggie is an endearing name for cat. English slang.

Yes, I understand what you mean about fuelling hallucinations. Liz doesn't hallucinate, but she get's fixed ideas that things have happened, which have not, and she gets angry too from time to time.

I had to stop gardening last June. Liz was still at home and it became too difficult to leave the house. I was so worn out I just abandoned it apart from some fruit picking. I am hoping to manage a little this season now she is in a Nursing Home. Truth of the matter I feel like I've aged ten years doing the care. I think my heavy heart has something to do with it too.

I only spent a couple of hours with Liz each day. By the time I go she is so tired. So after the news and 'chat' she curls up and I hold her hand and read to her.

Yes, I have more acceptance now. Earlier in the illnesses course I would rail at the gods! Yes I have acceptance now, but still the ongoing loss. It was folk here who from quite early on encouraged me to try and make 'good memories' with Liz. Such good advice.

Thank you for the thanks . Its appreciated. I have learned so much on this forum and have had so much support too. I would have been so lost without it. So I try to put what I can back as well.

Your very deep love for Michael so comes across in your post. You sound like you are doing as much, and more, as anyone could do, but you are to preserve something of a life for yourself too. Caring and PSP can swallow us whole if we don't.

It's heartbreaking and miserable.

Warmly and hugs

Kevin

Mikey12345
Mikey12345 in reply to Kevin_1

Thanks again. I hope you have time for gardening this season. You are an inspiration.

We DO have moggies here!!!

Hugs,

Liz

Kevin_1
Kevin_1 in reply to Mikey12345

:) And some very fine ones too if I remember.

Thanks

I so wish you the best with this horrible illness.

Warmly

Kevin

Mikey12345
Mikey12345 in reply to Kevin_1

Same to you!

This is so sad. I feel for you and also thinking that’s the situation I too will face. Hugs to you both. Nancy

Thank goodness we don't go through this alone. This site is so very helpful and we only have to get through this day. Tomorrow is a mystery.

Hugs to you,

Liz

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