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My71 year old husband was in hospital for six months following surgery to remove a tumour on his spinal cord. As a result of being in bed for so long he has lost much of his muscle mass and has no core muscle control, He was discharged just over two weeks ago and I am finding it very difficult to cope. My daughter has put her life on hold to stay and help out but even between the two of us we can't get him from bed to wheelchair and into a recliner, His son who came over a couple of times to help (which resulted in a lot of sibling nastiness) simply can't be bothered. I feel so frustrated and helpless and spend too much time crying or snapping at my husband when I can't manage to sit him up or put on his diaper. He absolutely refuses to go into a nursing home which in any case we couldn't afford. But I really need advice on how to be calmer and less emotional please.

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Shirls google aging in place or you can get to it through the TAFTA website - they may be able to rent you the equipment you need. If it is just muscle you need for a very short period have you thought of contacting your local gym or sports centre to see if they would adopt you - not all of them can have children that need to be taken to school!!! let's not even go there!

Your local care agency will probably be expensive but as you only want 10 minutes of their time it shouldnt be too horrendous but I do know that when funds are limited you have to make decisions that aren't always easy. Also google charities in SA the Red Cross for example might be able to either help or guide you towards some charities that could help.

I don't know what your husband used to do for a job but if you still have contacts there they might consider offering support too or the local church. Good luck darling its going to be a bumpy ride so keep that apron to hand - we all need to cry sometimes but garden artist is right if you can just go outside and have 10 minutes to yourself weeding or dead heading blooms I am sure you will find it calming
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Shirls, I too am glad you're feeling better today and seeing options.

Spending time outside and "communing" with nature is I believe one of the most soothing and healing ways people can rejuvenate their spirits. There actually is a syndrome called Nature Deficit Disorder addressing the dysfunctions that can arise when people don't spend enough time outside and "bonding" with natural elements.
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Glad you're feeling better Shirls. We all have "those days" where we throw our aprons over our heads and sob to the universe. Luckily you can reach out here and have other people who understand what you're going through and offer support and some good ideas!
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Oh my goodness thank you all so much for your replies. And happy Fourth of July to those of you in the US. I did message my stepson last night to ask for help in the morning and evening but didn't hear from him for 24 hours, then he messaged that he could come round on Tuesdays and Thursdays after work about 5 pm but in the morning could not as he had to take the children to school and then get to work by 8 am. The school is almost within walking distance from our house and he has to go right past it but never mind, he did at least reply. So at least we don't have a family feud on our hands.
I have been much calmer today and we managed to get Roger up and into his chair and then visitors arrived and my daughter went out for the day - she has discovered a lovely nearby nature reserve and said walking through the forest soothed her soul, which makes me feel happy.
I will definitely explore all the resources available instead of figuratively throwing my apron over my head to cry. I guess I was just having a bad day yesterday. Misslauri it's quite okay, I would certainly feel awful if I was helpless and my spouse was nasty to me and I'm learning as I go. All will be well and if it wasn't nearly midnight here I'd go and look at other people's discussions on this site but I'd better get some sleep.
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I didn't mean to be mean spirited. I just wanted to show the urgency of the situation. If you have made the choice to keep your ailing spouse at home you have to do whatever is necessary to make it pleasant for them. My poor dad could hardly function but managed to tell the Chaplin he couldn't do anything right to please my mom,no matter how hard he tried. Sorry to make this about my situation. I'm really sorry shirls, I can't imagine how hard this is for you.
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MidKid had an excellent point about getting a physical or occupational therapist to show you how to move your husband. I'm betting YOUR life would change too. I'm assuming you have a gait belt for him. If you font, you need to get one right away. If you can't easily find them where you live, order one off the internet.

Also, Google 'getting patient out of bed youtube'. You'll find all sorts of videos that will show you how to do it depending on your husband's strength level. It doesn't take a man yo do it. It's not brute strength, it's knowing how to do it and proper technique.

I also suggest you find and contact any senior services organizations you have near you. I'm obviously not aware of how South Africa works, but it may be possible there are some very low cost or free services you can avail yourself of. You would have some things available like that in The States. It'd my understanding that MANY other countries are far ahead of us in senior services. Make Google your best friend. Here, I would Google 'senior services' followed with my town or township or county.

If the hospital where your husband had his surgery has a social worker, social services dept or the like, call them very first thing Monday and see what resources they may know of that can help you at home.

Call your insurance company, explain your hardships and see if there may be other benefits that are covered under your policy of which you are unaware such as home nurse and physical therapist visits. Or ANYTHING else.

Lastly, don't be afraid to spend some money to help you help him. Look into aids that might come once a week to bath him, for example. Here, I found a professional personal care aid that would come once a week for mom. It cost $30. So, if you HAVE $$ resources, you simply must use some of them. Spend some of your rainy day money. It's pouring outside.

My heart goes out to you and your family. Even to your stepson. I would recommend you be very clear what you'd like him to do if it's at all possible for him to do it. Young men, especially, often don't get it. And the reason my heart hoed out to him as well is that someday, he will have to deal with a broken heart for all he didn't do.

You are all in my prayers. You, especially, with your angel wings.
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Shirls, as much as Missluari may have come off sounding mean-spirited, you MAY need a more experienced doctor to help you with your depression. Your old antidepressant may not work anymore or you may need an additional med to boost its effectiveness.

I like CM ' S suggestions about talking to a local care home about learning techniques for moving your husband or using YouTube to find that expertise.
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Shirls, find an occupational therapist - you're in South Africa, not on the moon. Get that person round to the house to take you through routines that will work, and explain where you can find the equipment you most certainly do need to handle your husband safely - safe for him, as well as for you and your daughter.

I know it must put your heart in your boots that your stepson won't budge when it comes to helping with his dad, but you've got to get past that. Forget him, let him be his own problem. What will make all the difference is not his giving you half an hour of his day but your acquiring the professional techniques that will make it possible for you to manage your husband capably. It's a steep learning curve but it can be done.

If you're short of OTs in your neck of the woods, then go online and get busy on YouTube. Ask your nearest care home to send you an experienced carer to show you what to do. Come on, use your imagination. I know it must feel like it, but YOU ARE NOT ALONE. Best of luck, keep posting.
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Misslauri--
You lost respect for your mother when she was taking care of your aging father and SHE had needs and feelings? Wow. I truly hope you didn't mean that the way it came across. 24/7 care of ANYBODY will make a person weepy and irritable. Throw in aging issues and it's a flat out nightmare. Antidepressants are notoriously hard to dx properly, and while they certainly have their place--they are not a joyous walk in the park, nor are they 100% the answer. Shirls needs help and support...if you can't give that, maybe just keep your thoughts to yourself. She's having a rough go.
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Go to a different doctor. Get a different antidepressant that works for your specific issues. My mom was like this with my dad when he was at home in hospice care I and I have totally lost all respect for her.
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Shirls--
Vent away, nobody will judge you! I worked Elder Care as a profession before ruining my back on it---I was not properly trained how to lift and move my clients. Once a very kind physical Therapist (I think you call them physios) took the time to show me some incredibly easy moves to "help" my clients help themselves--my life changed! And yes, if possible hire some young backs to help you. As caregivers we are stressed to our limits and then some. You're no good to your husband unless you can take care of yourself. Did you speak to HIS mindset? Is he able to help you help him? I hope so. I'm really sorry for the situation you're in--hope you can glean some great info here.
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If you step son won't help, ask around to see if you can find some strapping young college student who can come over and get your husband situated in the morning or evening. Or a nursing student who needs some real life experience with moving patients. If you go to church, ask for help from your pastor or priest. Put the word out that you need help and see if you can find some! Good luck and please come back and let us know how you're doing.
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How can someone sustain a spinal cord injury and be ineligible for rehab? Just because it is non-traumatic, that does not mean it is not "SCI." Maybe see if there is some kind of help via these organizations:
www.sasca.org.za/
www.spinalcord.org/resource-center/askus/index.php?pg=kb.page&id=1594

71 is just too young to give up on regaining strength and health, or functioning in the community. Long term Foley cath is not ideal either. Usually intermittent cath is done. It sounds like your stepson is being a jerk, unless he just does not get that a small effort would make a huge difference, and would not make him late for work necessarily!! People not helping who COULD help, does not help anyone's stress level!! In home PT would be of some help - maybe they can troubleshoot the transfer situation, or get you a transfer board (aka sliding board) and show how its used.

I would say don't get depressed, get angry and then get assertive! You have not been getting the support that you and he need in this situation.
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Oh my goodness Eyerishlass I DID assume my stepson would know and offer to help. I will ask him and maybe I'll be as lucky as you with your brother.
GardenArtist I do find cooking and baking soothing. I reckon I've made more muffins in the last couple of weeks than in the last year! Will try cinnamon and ginger cookies next.
Luckylu I will check out a hoyer lift, though I've heard they are rather large.
Thanks all of you for your replies I am so grateful. Hugs to you all.
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A hoyer lift would help,I think.Its a machine that transfers the patient to his chair from the bed or toilet.,but I dont know if thats available where you are.I am sending a prayer up that you have better days.Take care.
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Sorry to learn of the difficult time you're having. It's unfortunate that the health care plan doesn't provide the rehab that your husband needs or that he didn't get it immediately after the surgery during his recovery.

However, are there appeals procedures through your health plan? I'm not familiar with SA medical care, so perhaps appeals aren't allowed, but if they are, that might be a consideration.

Are there any local legislators who might be on health care committees who could intervene on your behalf? Are there any ombudspeople who do the same? Any other oversight agencies? What about a governmental health care authority?

Given your son's lack of cooperation, I'd view that as a given and move on without him. It might be easier in the long run to accept that he's not going to be a part of your husband's rehab than to hope that he'll step up to his responsibilities.

As to the distress you face, unless your husband is having an immediate crisis, set aside a certain amount of time regularly to do just what YOU want to do...daydream, read, look at soothing magazines or photos of cute baby animals, listen to music, knit, crochet, work in the kitchen....something just for you and not for your husband.

Sometimes cooking or baking can be soothing and relaxing, especially if you bake something with cinammon and/or ginger - the fragrance alone is soothing. That's why I keep a bottle of cinammon handy to take with me if I have to take my father to the ER. Aromatherapy works wonders.

If you're a gardener and have herbs, pick some sprigs of lemon balm or a mint - they also have relaxation properties.

If he interrupts your private time, go out for a walk. Make sure your daughter has that opportunity as well so he doesn't start playing the two of you off against each other.
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Shirls, this is a wonderful site to come to and vent and make connections. I'm so glad you found us.

I don't have any solutions on what you can do to stop the weeping and curb the irritability but I can say that without help, I'd be weepy and irritable too. You're doing an almost impossible job even though you have help from your daughter. It sounds like you're in a practically unworkable situation and the stress from that is eating at you. How can it not? I think you're feelings are normal based on your situation but if nothing changes I don't know how you can be less weepy and angry. You need help, that's what will help your stress level.

Have you actually asked your stepson to come over for 10 minutes in the morning and 10 minutes after work so that he can help you get his father situated? You've asked and he's said no? If that's the case count him out and don't give him another thought. Try not to let your resentment get the better of you, you have enough on your plate as it is.

If you haven't asked your stepson for help for those specific times give it a try. I've shared this story many times on this site but when I was caring for my dad I automatically assumed that my brother would know that he should be helping. My brother automatically assumed that I would ask if I needed help. We went along like this for quite a while and when I was on the verge of a nervous breakdown from the stress I called my brother in tears. He had no idea how difficult things were because I never shared that with him because I assumed he knew. Once we got all of that cleared up my brother jumped in with both feet and we became an amazing team. The moral of my story is ask for help. From the son, from a neighbor, from a friend....

We're here for you, Shirls. Use this site. This site saved my sanity when I was caring for my dad. My dad's been gone now for a couple of years but I continue to come back and offer what help and support I can.
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Thanks very much Babalou. I am on an antidepressant and was coping okay before this. My doctor doesn't want to put me on anything heavier. I live in South Africa and we don't have Medicaid. We belong to a private medical aid (Discovery Health) and they would not fund and further sub-acute care or rehab though I have requested that they send someone to our home to assess my husband as he is still catheterized and I fear he may have a UTI. The structure of the plan we are on only covers in-hospital physiotherapy and my day to day medical benefits all got used up in paying for his wheelchair and medications when he came home. I don't think we have eldercare attorneys in this country though I will make enquiries.
I'm sure I could manage just fine if only my stepson would spare ten minutes before and after work each day to help get his father up in the morning and to bed in the evening as he only live about five minutes away from us but I'm afraid to ask as the last time resulted in such an ugly scene. The other children (all adults) live far away and so that wouldn't work. Our friends who would help are all in their seventies and frankly don't have the strength to do the bed/wheelchair transfers.
Sorry, I'm really not playing the game of "Why don't you...yes but"! Just trying to give a clearer picture of my reality. We are pensioners on a fixed income and there's no state funding for this scenario. I just need to get enough control over my tendency to weep or yell so I can deal more rationally with this. It's been such a help to post here and thanks - I'll treasure this site.
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To answer your first question, YOU go to your doctor and find out if you're clinically depressed and start a course of antidepressants. Think of them as antibiotics for what ails your brain.

Second, why didn't your husband go to rehab after surgery? Was it recommended ? This is what he needs to get back his core strength. Call HIS doctor today and find out how to get that to happen.

Next, you need to visit a certified eldercare attorney to talk about finances and nursing home/home care. You will need the lawyer to help you figure out how best to structure your finances so that your husband qualifies for Medicaid and you can keep sufficient resources and your home to live in/on. If you go to the Money/legal bar at the top, you'll find resources. Remember, you need someone who action ally understands the whole Medicaid process.

As to "he won't go into a nursing home", let me remind you that 35% of all caregivers die before their charges do. Because of burnout, stress and depression. Ask yourself where your husband will be if you die. In a nursing home, but without you to advocate for him.

You can do this! You can care for him, maybe not at home, but you need help and HIS cooperation. Has he been evaluated for depression? They should have done that in the hospital. Something else to talk to his doctor about.

Let us know how you're doing!
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