Thank you Dools & Paul,

As I said to Croix, Broken records re scratchy & hard to understand. A record on fast rotation repeats an important message for me so thanks Paul. My psychologist is good but has had a some time off due to illness, conferences & holidays so visits have sometimes been further apart than ideal. I will see him tomorrow. My GP doesn't really know much as I haven't spoken to her about MH issues much except to get the referral to the psychiatrist renewed & then it was brief. She is aware of my husband's issues.

Today was a bit better. Someone from church took me out for a few hours. We went to a couple of parks in the Dandenongs & walked about, It wa nice to have company to distract me. It made a change not having to drive or to watch out for overhanging branches or read signs to my husband. I needed that break from my own thoughts. My husband seemed a bit brighter & wanted to come home tomorrow. This will depend on how he goes overnight & they want him checked by someone from another facility. I'm unsure how things will go once he is home because he is so weak. He isn't eating by mouth & not having much through the tube so it will take time for me to adjust to his needs. .

Dear Elizabeth,

Sorry I don't recall all you have written previously, is it possible for you to get some assistance in the home when your husband returns? Is there someone like a District Nurse who can come in and check on your husband's health? Can the hospital suggest anything to you or maybe your Dr?

It is wonderful you were able to have that outing with the person from Church, that is lovely! One of my Uncle's is legally blind, I don't see him very often. When I last saw him, he was telling me how amazed he is with his dog's ability to lead him safely.

Dear Elizabeth, wishing you and your husband well. Huge hugs from Dools

Dools, When I asked the hospital if help was available I was told no. He has me to do all the cooking housework etc & I can supervise him showering & dressing until he improves!!! No social worker has contacted me although a request was made. I rang the Carer Gateway run by the government. They suggested contacting the NDIS to see if that could be sped up but there is no way of ensuring that happens. I've had no reply from the NDIS.

Dear Elizabeht~

I was wondering how things are going, yesterday you mentioned a possibility your husband might be discharged. Feeding by tube sounds a pretty difficult thing to do.

Croix

I picked up my husband this afternoon. He is a lot better than he was but extremely weak & tired & relient of very heavy painkillers. I feel quite overwhelmed. Just going through the medications was confronting as there are so many including a couple of liquid ones which have to be measured accurately because of risk of overdose which is life threatening. I need to set up the tube feeding which isn't hard but it is another job to do. I think it is mentally challanging knowing he is dependent on me remembering to give him medications on time & encouraging him to feed sufficiently & working out how much to encourage him to do without overtiring him. I should be intelligent to cope but I just couldn't get my head round the huge list of new & dangerous medications. Because he can't see he can't even do it himself.

Dear Elizabeth~

I'm more than sure you will get it all perfect, you are a very capable person.

Now I'm sure you have thought of this but I'll mention it anyway, using pill organizers (rows of boxes you pre-load with medications for different items of the day) might be of help. It has the advantage you can sort most of it out when you are fresh. I do my own, a friend actually has them made up by the pharmacy (called Webster Packaging).

Croix

Hi Elizabeth,

Sending you some encouragement and best wishes. The tablet organisers are a great idea if you don't have that system already. Chemist would probably sell them as do some cheap shops strangely enough.

As difficult as this time is for you, please make time for yourself as well. I know that may seem hard right now, even if it is reading for half an hour or colouring, having a cuppa in the garden, just something to make time for yourself.

Wishing you well on this new journey.

Cheers from Dools

Thanks Dools & Croix.

Some of the medications are liquid so have to be measured at the time of administering. The majority of new tablets are painkillers or taken to manage side effects of painkillers. We need to be slowly reducing the painkillers but unsure how that will go. This means putting the tablets into an organizer won't work. Some tablets interact so need to be spaced 30min apart. Others have to be taken before feeds. I think I will draw up a table on my computer so I can mark off when I give him things & how much so I can keep track.

I felt very anxious last night. Too many decisions to make & knowing it is essential I do things correctly so the pain is managed adequately & he gets enough food. Today unsure whether to encourage him to get up so he can feed or should he get more rest now is has painkillers. Dreading helping him in shower as he will find it hard to step into shower & can't bend down to wash or dry himself. I helped him in hospital & found it impossible to help without hurting him when touching him even gently.

I need something to look forward to to get through difficult times but I don't have this.

Dear Elizabeth~

You sound on top of things, the idea of the drug use chart is an excellent one. I've found at times I'm unsure what I've taken, and a record is most necessary. For me that's the empty time-slot in the dispenser, four you the chart.

When on painkillers I've not so much needed to rest as been a little clumsier. So getting him up might be difficult at times. As for the shower, perhaps sometimes a sponge bath instead?

I know, trying to suggest things you have already thought of:)

So what are you doing for your time-out? Does not have to be huge or dramatic, just something?

Croix

Thanks Croix, He is tired due to disrupted sleep due to pain since the injury, medications & lack of nutrition. His weight has dropped so managing his feeds is important. He's still not getting enough as he is having to feed so slowly to cope with the resultant pain & other issues & then he needs a break. He prefers a shower & it is no harder than a sponge bath for me.

I have managed doing the essential things but feel depressed. It is the emotional toll having to watch him & ensure he has everything on time. I'm going to try to attend a walk for carers on Friday. I've never done this before & unsure how I'll go getting everything done on time so I can leave my husband for a couple of hours.

My mood was OK yesterday until I picked up my husband & came home but since then I've really felt down more than the situation warrants.

Hi Elizabeth,

know you have already looked at different avenues, but is there some organisation that can offer you even a couple of hours respite a week so you can go out and do something for yourself?

The walk you want to do with the Carers group, are the people running that able to offer you some help and support in some way?

Do you have a shower chair for your husband? I recall working in Aged Care and needing to be very careful when assisting people with a shower.

I recall the first time I had to shower a man. At the end of it, he said to me "that is the quickest darn shower I have ever had in my life" only he didn't use the word darn!

I do so hope your husband is able to feed better with less pain as the time goes on Elizabeth. Wish we had the answers for you!

Best wishes from Dools

Hi Dools,

I rang Carers Victoria yesterday to get advice but no one was available to speak. Still waiting for a call back. Several years ago we had someone come to give me some respite. It was a disaster. Neither I or my husband felt comfortable with the carer.

We have a shower chair but my husband prefers to stand as getting up & down from chair is too hard. The showering went OK yesterday. It is just that I have to be ready to help when he wants so my day seems to be cut up fitting in with his needs. Last night he was up & down to the toilet due to some medications. Will cut them back toiday & then discuss with GP tomorrow. This meant I couldn't get to sleep for hours. He is awake now & has had morning painkillers but too tired to get up. Once again there won't be enough time in the day to fit in enough feeds.

I've never done this walk so unsure what it will be like. I think they may have guests from different organisations who may be able to assist but unsure how this works or who will be coming so don't know if it will be helpful.

I wish I could be less emotionally fragile. The smallest pettiest things seem to really upset me.

Dear Elizabeth~

I'm not sure about petty things getting a reaction from you. Everything you have mentioned here is pretty major and the fact you are actually coping is pretty awesome.

It is a frightening and emotion ridden time is, and you are riding it out and functioning, doing what needs doing.

I hope the carer's walk goes well (no need to complete it all if it is a strain) and you meet others who understand and maybe even have some hints

Croix

ThanksCroix, I feel like I'm over emotional & over-reactive at the moment. I went on the walk. Unfortunately weather was bad so the walk was very short & limited to made patha in park to avoid flooded areas. The others were in very different situations to me but it was nice to get out. We stopped in a cafe for a drink afterwards which was nice.

Saw the GP today with husband. I became upset trying to explain what was happening She was horrified by the medication prescribed so we had to explain why which for me brought back all the difficulties in the hospital. I found it hard to speak openly as my husband has been complaining that I don't understand when I've tried to encourage him to reduce medication. She confirmed my concerns (although I didn't feel able to mention them myself without my husband getting upset with me) We go back next week as she wants & she hopes to further reduce the dangerous medications. It feels like walking a tightrope trying to manage my husband's pain but trying to limit the damage done by the painkillers

Hi Elizabeth,

I feel very emotional just reading what you are needing to do to assist your husband! I worked in aged care, had one shift a day and that was enough when it came to being responsible for the health and well-being of other people.

I am in awe of what you are managing to do. It sounds like the trip to the Dr was very beneficial even if your husband did feel a bit upset here and there. It is important to get the medication sorted and for his Dr to know what is going on.

My father came out of hospital a few years ago after an operation and stayed with family for a week before returning home as his medication was quite confusing. A local Dr was able to help him sort it all out. Hopefully the Dr will be able to do the same for your husband.

Have you been to have a chat with someone yourself Elizabeth? My GP is a lovely compassionate man and listens to me a lot! He offers support and ideas. Hope you can have some support for yourself and a listening ear.

Shame about the weather and the walk. I had a walk in 2 different shopping centres today due to rain.

Hoping you can get things sorted Elizabeth!

Cheers from Dools

Dear Elizabeth~

When things are overwhelming and we are responsible for the welfare of the one we love then yes, we do get emotional and coping gets harder. I used to get upset simply giving my first wife diabetic needles, and I suspect they are not in the same class as the drugs you are forced to deal with.

Having the GP to help sort it all out is a bonus, I'm glad you thought to take your husband to see her.

The carers' walk sounded as if it was a good thing, even if you walked less than you expected. Do you plan to catch up with any of them again?

Croix

Thanks Dools & Croix, I don't think I'm doing very well. It is not physically difficult. It is just the emotional side which I'm struggling with. My husband has complained a few times because I don't understand what he is going through. Yesterday he go upset as he wanted to tell me something when I was on the phone but I didn't listen to him. It was an intense call where I was needing to really concentrate to make sure I explained everything clearly. Unfortunately my husband wanted me to tell the person something else but I couldn't listen to my husband while discussing things on the phone. My husband's speech is affected so he is very hard to understand. I became really upset by my husbands complaint. I know I need to be more understanding but his complaint made me feel useless.

I will try to attend the walk again. It is run monthly.

We had planned a holiday early June but my husband won't be fit to travel. I still need to cancel everything & try to get travel insurance to pay us back. I find that process extremely stressful & i am still waiting for the GP to write a letter. We have to go back for a review on Monday & she said she will do it then. I found a government funded organisation that can fund some repite so I can go away on my own. I'm debating whether to do this. I feel guilty leaving him so soon & going on my own. I'm worried about people thinking I'm terrible being so selfish. Is it worth the effort as I will need to prepare a lot to ensure my husband can manage without me. It will be a rush & it is hard to know just how my husband will be at that time.

Dear Elizabeth~

I've had exactly the same problem on the phone - from both sides, me talking and other times me wanting to add something. It is a difficult thing to navigate and if I'm pressed can be less than tolerant. You know the answer as well as me, tell the most obliging party to wait a moment, however in real life it does not always seem possible:( Ah Well.

With the respite the fact you found the service shows how capable you are. Of course you should go - at every opportunity! It is not a question of people thinking you selfish if you went- more a question of them thinking you need your xxxx xxxx if you do not (I don't think I'm allowed to say anything that disrespectful here:)

There is a line between loved-one and patient, something very hard to draw. Guilt seems to be a common result. you are doing a mighty job.

How can a walk be run monthly?

Croix

The walk is run by a group for carers & they provide a staff member to run the walk & they take time to talk to attendees to see how they are managing & give advice or encouragement if needed. The walk is in a public park so anyone can walk any day but walking with the group is once a month. The walk acts like an informal meeting allowing carers to meet other carers & professional who can give advice.

My husband is slowly improving. My son invited us for mothers day but my husband wouldn't have coped with the trip or sitting on their seats. I suggested they come to my place so they brought the food to cook here & my husband was able to enjoy their company in comfort. He managed to eat a very small amount without & issues which is a big improvement. It was nice to have them around but I wouldn't have coped with all of my children & families. Hopefully we will get together next weekend.

Hi Elizabeth,

It is wonderful some of the family were able to go to your place and were prepared to bring the food and cook it by the sounds of things. Good to know your husband was able to eat something too!

If you are able to organise respite care for your husband a holiday by yourself may be just what you need right now. Hopefully after a break you will return home refreshed and reinvigorated and better able to cope with everything.

A bit of time away does us all good. Your husband may not agree to it at first, he may be fearful, I can not begin to understand how he must be feeling due to his health and increased vulnerability.

You both need to be cared for right now and have your needs accommodated.

Hopefully you will be able to work something out.

Cheers from Dools

Dear Elizabeth~

You wisely ignored my attempt at humor, I'm rightly squashed:)

Your news was pretty good, having the food arrive with visitors is an excellent arrangement, I realy hoped you enjoyed the visit. It was good news about your husband's being able to eat a little too.

As Mrs Dools says both your needs have to be addressed. Have you had time to think more about respite?

Croix

Thanks Dools & Croix

Sorry I didn't think I could squash a walrus or are you suggesting I'm grossly overweight!!!

It was nice to have my son & DIL cook. My DIL is an excellent cook & she made sure my son followed the recipe properly!! It was good just having the one family. We couldn't have coped with multiple families & the grandchildren all egging each other on. Normally it is good to see the cousins playing together but not yet.

Saw the GP again today. & told he needs to continue the strong painkillers at night. He tried lowering the dosage last night but couldn't sleep so was exhausted today.

I am going away by myself at the beginning of June. Still feeling apprehensive & guilty. I'm trying to deal with travel insurance to get money back for cancelling for my husband which I find stressful. I need to prepare a lot of things so my husband can manage without me. I hope the carers work out OK for my husband.

I still feel exhausted all the time & find it hard to be motivated. The mornings are difficult as I need to wait until my husband is ready to get up so I can help him. This means I can't start doing things without being interrupted. I miss being a wife instead of a carer.

Thanks Dools & Croix

Croix I'm sorry I squashed you. I will need to lose weight to avoid doing it again!!!

My husband is able to eat more normally now & he has stopped the daytime painkillers which is enabling him to function a bit better. He still needs high doses at night so he can sleep.

I have cancelled the trip for my husband & will go on my own. It is scary wondering how we will both manage. There is a lot for me to organise beforehand to ensure my husband can cope. My psychologist was pleased as he feels it will be a chance to learn what works as he believes I will need regular breaks away to cope with my situation. I will speak with the people arranging respite closer to departure so I can give them a better picture of what my husband's needs will be.

At the moment I still feel very flat & tired. Struggling to get motivated to anything. I need to work out what my priorities are so I can get the essential things done which includes getting enough rest to recover from the emotional roller coaster I've been on.

Hi Elizabeth,

I am sure you have mixed emotions about everything right now. It will good for you to try some respite care for your husband. Make a list of all the questions you want to ask the service.

Please realise too that one person may not be a good fit for your husband, that does not mean that other people will not be capable. When I worked in Aged care, some residents like different staff members, that happens anywhere.

Hopefully you will be able to sort out the insurance. Sometimes that can be a bit tricky! I'm sure some companies hope you will give up! Can a family member help you with that at all?

Also hoping your holiday goes well and you are able to enjoy yourself despite thinking about your husband and wondering how he is getting on.

Cheers for now from Dools

Dear Elizabeth~

Please don't apologize, we walruses are pretty flexible and can bounce back from a realy professional grade squashing with no harmful effects. As for if you should lose a pound or two, I'm not silly, I'll remain mum:)

Mrs Dools is quite right, there are all sorts of carers, and as I see some every week at a friend's place honestly say the vast majority are a real asset.

I'm glad you are brave enough to go by yourself on that holiday. It is bravery as you are facing the unknown and know you will worry and have the guilts. The one thing it is not is failing your husband. Like any long term activity you cannot go flat out all the time, you don't sprint in a marathon.

I think your psych is right, you are exploring boundaries and that must help for the future.

Croix

Glad you bounced back from the squashing!!! As for my weight: in your mind I should have a perfect figure, very fit & good looking. Just as well you can't see the reality.

Had to babysit yesterday & then needed to clean & tidy the house today as a result. One grandson was dropped off at 7am so started early. My husband was able to retreat to his bed & listen to talking books whenever he needed. He slipped in the creek on a walk. Fortunately only one foot went in so had to wash & dry socks afterwards. Good job his parents aren't too precious about their son. Then my daughter dropped hers off at 11am after which bedlam quickly ensued. My husband was trapped in his room as a giant cubby + toys took over the living room. They are good kids but don't understand what having a broken rib means. Later my son took his son home & things quietened somewhat but I cheated & pushed the pile of toys cushions to the side so my husband could get through safely. I got out an encyclopedia & showed then the pictures of the anatomy of the human body. The 4 & 7 year old were fascinated & asked lots of questions including studying the differences between males & females. Their mum is pregnant so they were trying to understand where the baby was!!! They also love looking at the world globe. The other funny thing was my son's 4 yr old pointed to the postman & asked why he was driving his motorbike on the 'human road' instead of the 'car road' where it belonged. I love the way kids can make up words or phrases which so accurately reflect their meaning but is so different to normal words or phrases.

Dear Elizabeth~

You certainly sound as if you are on top of the babysitting. I thought for a moment it was your husband got the wet foot, but worked it out. Very sensible to retreat with boisterous kids on the rampage.

They may be the last generation to have things pointed out in books.

Croix

Yesterday was full on as th family got together for birthdays & mothers day. It was delayed due to my husband. It was nice seeing everyone but I was glad for peace & quiet after they left.

Today feeling extremely tired. I haven't recovered from the initial fatigue associated with the first hospital admission despite attempts to rest. I feel like my life is on hold because I'm too tired to do anything useful.

Still tired.

I saw my psych yesterday & we talked about my plan to go away on my own. He agreed with it.I mentioned having checked that my husband was OK about me going. The psych asked 'Why do you need permission.' He thought getting permission was giving someone else control of my life which is wrong.

I was brought up where family members always checked with others before making definite plans. I remember my dad asking mum if she minded him going out for an hour or 2. It was considered polite to check with others to ensure your plan didn't conflict with the other person's plan

My question is When is it appropriate to ask permission & when is this feeding into my tendency to fit in with everyone else & put my needs last.

I'm interested in anyones opinion

Just diagnosed with drug induced parkinsonism, from anti psychotics, anyone else? not helping with my depression and anxiety.losing all material things but still hopeful.