Hi all. I've finally had to admit defeat and ask for help. Last Monday morning first phone call was made to the OT only to be told our OT had moved to France three months previous. They had assigned us a new one, she would ring me back and arrange a visit.... My goodness she phoned back ten minutes later and would come out in the afternoon. Since then its been bedlam. Had deliveries of all sorts of equipment. a different person everyday. Today is the first time we've been left on our own with no appointments. They don't know how I've been able to manage this long without help.
Its all been a total shock to our system. I wont say routine, as we haven't had one in months.
Hospital bed arrived two days after her visit. Taking apart our lovely pine bed was exhausting, thank the Lord for power screwdrivers. Re-arranging the bedroom was no small task either.
To be honest I didn't think the bed would of made so much difference. Bedtime and mornings are so much easier. when the ceiling hoists are fitted I would imagine it will be a doddle to what it has been.
We've also received a hoist on wheels (that is fondly known as the stork) That is in use everyday, when he's in the sling he looks like a new born baby being delivered.
A commode that wheels over the toilet. Now that is a godsend.
Barry is no longer able to walk, feed, shave, shower, wash, dress or toilet himself. I've managed alone for a few years now. But its the unable to walk that has finally broke this camels back. He will try everyday to walk, then falls. Its the falling over that has done it. I'm now unable to get him up without the storks help.
Adult social worker came, she was trying to get me to have him admitted for respite. I don't think I'm down that particular road yet. I do know Barry isn't. Anyway we have to have two carers every morning and night..... I'm dreading it never mind my poor darling
That's all for now
Deb xx
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Deb I am totally amazed you have had no help until now. Thank goodness that is all happening now. I think you are made of sterner stuff than the rest of us or maybe you don't realise the toll that all of this is having on you? At least think about respite and consider where he could go to stay if you need it? We have all ended up needing it despite not wanting to go down that route!
We are getting full time care at home from today. My mom physically is no longer able to lift him and he resists often and pushes back. For him we really hoping that just being at home with full time care is the best option for him. Giving him all the love and support he needs.
Well Done Deb! I know none of this has been easy for you and you will not like having the carers coming in, but honestly, what is the alternative? Barry being whizzed into a nursing home, that you won't have a say in, because you have collapsed. I know you say neither of you are ready for respite. You never will, mentally, but I suspect your body is saying otherwise! please listen to it. Look around now, for somewhere nice for Barry. By doing this you keep in control. Respite is extremely worth while, for both of you. I wouldn't say Steve loved it, but he certainly didn't mind. Recognised that I needed the break and enjoyed the fuss that the staff always made of him. For me, knowing I had that week booked, gave me something to look forward to, a whole week, of not having to jump, everytime there was a bang, time to breath, even have a bit of fun. Also it taught me to be on my own, which has been been so valuable now.
You now will have some precious time away from caring. Use it wisely. Remember anyone can do the physical tasks for your husband, only you can love him as a wife should do, go back to doing this most important part of your lives, let others worry about the rest.
Very encouraging to hear. My mom finally gets the full time care at home that has been needed for my dad. As the carer she really does need a break so hopefully having nurses at home will allow her to have time off.
Hello Deb your post reminded me of exactly how I felt after three years of sole caring. Defeated and angry with myself that I could no longer manage We too have an excellent OT - hospital bed, airflow mattress, hoist, excellent sling. Unfortunately we can no longer use the glider commode but what a super piece of equipment it is. Hubby is bed bound now and carers in three times daily. Thought I would hate this but surprisingly you accept the interruptions and the carers do an excellent job. I am learning to accept what is offered and do not feel such a failure. Try to do the same. Jx
Hi Deb you are exactly where I am!! we reached out and asked for help a couple of months ago when we were turned down for CHC funding. I called out for help as we couldn't cope anymore either. Within a week we got hospital bed, hoists, wheeled commode over the toilet and slidy sheets to help with bed transfers. We have also got 2 NHS carers 3 times a day which started this week (they are hospital admission prevention team) until social services can find carers. It is a massive relief!! I would be interested to hear about the respite situation as I think we need this too?
I have also sorted all medications by blister pack and home delivered along with Tena NHS presciption pads. Hope you start to feel better able to cope?
Aww Deb I totally understand you and understand you must be very anxious about having carers etc, but please bear with it and accept the help! I'm afraid the point comes when we can no longer do it alone!! I know exactly how you feel, and it's like everything is spinning out of control but trust me, the help will help!! Keep us posted x
You must be made of sterling stuff Deb, Ben was nowhere as far down the road when he started having carers once a day. It's now twice with two carers as not safe for just one and every piece of equipment imaginable except the hoist, I suspect that's not too far away as he gets weaker but he just about manages using the standing board and the assistance of the riser recliner chair. I'm just about learning to switch off when the girls come in and mostly leave it to them now. Ben has his first respite in a couple of weeks and I'm dreading it, already on a guilt trip and he hasn't even been yet.
Take good care of yourself and be grateful for the help, it does make a difference not having total responsibility all day and every day.
You have managed wonderfully. I take my hat off to you. Well done for getting help to. We too delayed that until I was on my knees.
A couple of things though. Don't reject the respite care out of hand. That too is part of the learning curve and a one week respite will give both of you some insight into what the Nursing Home thing is all about. That will be useful later. It also gives you a break I was astonished at how I had become used to perpetual tiredness and somewhat of a low ebb.
Finally: I would strongly recommend you ask the OT to refer you for a Continuing Health Care Assessment. That's the other big step. Being invaded two or three times a day by carers who will do the bathing toileting and dressing. You might feel that is too early for you both. Its worth a thought though. Continuing Health Care is not means tested and it will pay for the care he needs.
My goodness Deb you are a Wonder Woman to have coped until now. I am pleased you are now getting the help you deserve. My husband is not yet at this stage but twice per year for last two years his family have looked after him for a week and I have a holiday. My last break was in April and next one in September currently on a count diwn. I think I would go mad without those breaks so cannot imagine how exhausted you must be. I would support all previous comments about the cavalier if respite. I am sure I am a much nicer wife after a week of sleep and rest,
Take care of yourself as you embark on this new era
Hope you enjoy the relief if having help, even though you lose some independence !
I would suggest you consider respite. Even if, as I do, you visit him in order to monitor his care , you will be amazed at the relief from the " always on alert " we all live with. It lets you find a bit of yourself again.
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