Hi, our local hospice have very kindly offered me some music therapy sessions. Don't know what that means yet. Only had the first session this afternoon, where he just asked a lot of questions.
I was describing my life and how it affects me, I.e. If I hear a crash, I am up, half way across the room, before I realise S is somewhere else. No doubt you have all done the same. Any way, he made the comment, that I thought summed up our lives. He said, what I was describing, was how soliders feel when they come off the front line, after being on constant alert. In other words, all this fighting we are doing and why we describe it as that, is because we are soliders, fighting a war, on the front line and we are going through the same traumatic stress.
Not sure if that is giving me any comfort, or making me more depressed. How about you???
I'll keep you informed as to what this music therapy entails.
Lots of love
Heady
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Heady
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I definately feel that I have some stress syndrome and it is affecting my vision , this PSP is certainly having an adverse affect on us and I will probably need therapy when its all over if not before xxx
I am getting some now. Although at the moment, the guns are pointed at the front door. Yet again the Carers haven't turned up to put S to bed. How many times do I have to put up with this????
Heady we are all so stressed with one thing and another, just a bit to tip you over the top, the careers turning up late, means you loose the bit of precious time for our selves. Feel like I am going to loose it big time, George tried to get out of bed, goes mad when you put the sides up. Stress stress stress xxxxx
He got out of bed this morning, am surprised he didn't break his neck. He is eating better but choking a lot. I have to call his aide to settle him into bed since I sure as hell can't lift him. Again, they are suggesting hospice come to the house. They are telling me he will get his meds, OT, PT and whatever is suggested by the Dtrs. Am going to look into it more before I go crazy.
Heady, they are suggesting D for hospice at home.I don't think it would do my any good, music that is, all I want is D back to me. Yes I am depressed, very but won't take any meds. Will be following your posts.
I am totally interested in music therapy. b used to play music; guitar.....the last time he had the guitar in his hand...he could not remember how to play....
PTSD was first recognized with soldiers and has since been applied to many other consequences of life. I find myself escorting those who seem to have a gimp in their walk...I don't know if that's ptsd or just my controlling nature.
I can't wait to hear how the music therapy sessions went...have fun!
Seems about right. Bugs has been in hospital since sunday. I still jump at noises off even though she is not here.
I have just swapped one type of stress for another. Bugs is in the AMU and they have board on the wall with other encouraging acronyms. I think someone went on a team building course.
They told her she was to be discharged yesterday even though she had not seen the dietician and could not get out of bed/stand let alone walk. She even needs help feeding at the moment.
8.30pm yesterday they decided that she could stay! She might be sent to a rehab unit.
Now I have the joy of dealing with NRS Healthcare and Virgin Care.
I will add my own initials to their board - ABC. Absolute Bl..dy Chaos.
Heady, my husband had his first music therapy session yesterday, someone at the hospice day centre played the piano, and requests were asked and everyone sings along, Ian loved it as it was mainly musicals, so lovely to see him happy, but we only get 5 days here, then he has to be referred again, I think it is their limited resources and the huge demand on them, but it is so lovely and staff are great
I have had serious issues with our care agency not sending someone or being over an hour late, by which time Ian is so stressed and shouting at them, I have now found a male carer who works for himself, and he is supplementing the agency, like doing the weekends, I think I will use him over Christmas too, you may find someone online, as it seems a lot of carers are fed up of the agency creaming all the money and paying the minimum , self employed carers are about half the agency fees.
I totally agree that it takes some time to adjust to a husband or partner not being there. Les is in a nursing home and I still jump at the sound of anything different. Having 3 cats who produce thuds when jumping off bedroom furniture.
My daughter has come up with the fact that what we are suffering is that we are grieving for Les although he is still here. It's a pretty good description of all of our feelings. My son, his wife and Fiona and I are so often in tears. We are learning to control it a little, but when the dam bursts we have no way of stopping the tears. Usually our grandchildren are present (all 5 of them, aged 13, 11, 4 and twin girls 16 months). When PSP comes through the door life changes for ever.
I had a serious fall 3 weeks ago and burst into tears as soon as I had limped back to the office - I was feeling sorry for myself, I admit - because Les isn't home when I get in to give me a hug. Our daughter is still living at home but it is so unfair to unload my feelings onto her so I try to avoid giving her more to worry about. I, unfortunately, am blacking out and falling quite frequently and I am constantly battered and bruised with swellings and lumps. I admit I did cry to Les when visiting him that night and he was so lovely. I fell asleep in his arms on the bed. I don't feel sorry for myself, I get on with it regardless. I know when it is going to happen now and refuse to walk anywhere knowing that it could happen.
Sorry I don't mean to go on about myself when Les is the most important person in my life. We have just had our 40th anniversary. After 40 years the PSP is tearing us apart and I can't fight it.
Pat, please remember, you are the most important person in Les's life, so your life does have meaning. Think what would be happening to him without you being around to fight his corner. He needs you, he needs you fit and well. Have you seen a doctor yet? You must, this isn't normal, even for stressed out people like us.
Thank you Heady. I haven't seen the doctor yet. I will make an appointment at some point. Les is the most important thing to me and I just can't let him down.
How can you look after Les, if you are ill. Ignoring it, will not make it go away. What happens if you collapse? Who will care and look after Les then? Please don't let a crisis happen, before you do anything.
Hi Heady, you are not nagging just being sensible. I will see if I can get an appointment today. My stress levels are very high at the moment as my dearest mother-in-law is appalled that Les has no visitors in the afternoon, and told Les he should bring the matter up with the family. I spend every evening with him apart from Wednesday - my son and his wife go in that night. I spend Saturday and Sunday with him. He was in a dreadful mood last night and asked "what time do you call this" it was 5.50 pm. I finish and lock the office at 4.30 pm and pop home (2 miles) for a cuppa. I love him so much and yet I couldn't stay in the same room and left at 7.00 pm.
To make matters worse one of the carers - who thinks the world of Les - told me not to be upset as it wasn't Les. It was Les and this carer only started 3 weeks ago. He is amazing with Les and they watch tv together when Michael is having a quiet time. It helped to make me feel better. Les has always had a control obsession and I feel that PSP has rubber stamped it so his obsession with me after 40 years it is becoming a nightmare. He still has his metal capacity and makes decision for himself - sadly being double incontinent and the falls are the reason he is in the home as his mobility has almost gone too.
Sorry to ramble Heady - I am so tired of people making the decision that every horrible thing is the PSP. None of the staff have any idea how to react with a person with PSP but are prepared to go on a course to give them some insight.
Hi Pat, hope you do get to the doctors. It probably is only stress, that does lots of weird and wonderful things to the body, they may be able to help.
As to your "other" problem. I think it's the same with any illness, if there is a weakness in personality, PSP is bound to find it and exaggerate it 10 fold. Of course you have the other horror, Les is a male (sorry guys!!!). Let's face it, they don't go together!
Personally, I think you did the right thing, leaving early. I refuse to take any crap from S. It's easier now he can't communicate, but he tries to show his annoyance by refusing his food or medication now. Don't know how to handle this. I have tried just taking the food away and forgetting the whole silly business, crying, shouting, but nothing seems to work. Crying does a bit, but I spend enough time doing that, I don't need to keep resorting to that every meal time. I do understand this is his only way of showing any displeasure, don't care if he goes hungry, but we both suffer if he doesn't take his laxitives!
Glad Les has a good Carer at the home, it does make a difference. S has a nurse at the home he goes to for respite, Barbara, she is lovely, "she" doesn't have any problems getting his meds down him. I won't print my reply!!!
I have reached the stage where I jolt awake every time I fall asleep. I haven't had a full nights sleep in months. Now, I am so tired that i nod off every time I sit still, even when I am talking to somneone. Very embarassing. Unfortunately, I have caught myself doing this when I'm driving. It is very distressing.
I scheduled myself a "day off" today. I have our caregiver coming in even though I don't have any appointments or errands to run. Instead of having a day of fun, doing something enjoyable, I'm going to crash at my cousins house.
I see a psychiatrist to give me medicatios tokeep myself on an even keel. I have been diagnosed with severe recurrent depression. And I now see a psycotherapist to talk to someone, to keep me sane. PTSD has not been actually diagnosed, but it has been mentioned. So, it's very real. I can't even imagine what kind of shape I'll be in when this disease reaches it's conclusion. It's too frightening.
Sounds about right heady! But agree it is a rather depressing thought! I think the mental stress for me is worse than the physical side of things! But obviously that's cos my dads in bed all the time now, so no fear of falls! When he used to fall, my heart would bang and it worried the s**t outta me! It's all so flaming emotional and bloody knackering! Personally I think it's a killer all round! I truly hope this therapy helps in some way! Please keep us posted on how you get on! X
The more I read about PTSD the more I relate to it. M been in nursing home 6 months but still I wake in the middle of the night, jump at any noise in the house, feel listless all the time, feel guilty when I have to leave M at the home and get embarrassed when acquaintances say I am doing a great job looking after M (as though they find it strange that a man should care and look after his wife).
The GP has offered me tablets for depression but I am loath to give in to meds, but the longer the present condition continues the more I might try them to get my life back. GP is ex military so may be I will mention PTSD next time.
Sorry to be a drip.
Anyway hope you and S have a better day today between the showers.
Tim, You are grieving for all you and M have lost. You are grieving for how she is now. Its an intolerable position. You don't want to " move on" because you are in limbo.
Have you tried counselling ? Sharing it with a trained outsider will help but nothing can make it alight.
Why are you being a drip? All our lives are hell, yours included and if this guy is right about PTSD, well we all need help. Certainly does explain a few issues, doesn't it?
Heady sounds good to me! Anything which helps has to be worth a try? We will all be queuing up for it if it does you good.
This is going to sound weird but I keep adding to posts of others because I can't figure out how to post my own. I have two questions I would like to ask but no idea how to unless I hijack another post. Help!
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A very stressful day!
Diagnosis of Cortical basal syndrome
