what Next

[Lassie1331]

I, as my husbands carer, am really struggling to know what to do next. I have always consulted him about each step we take to improve his care. He is loosing the ability to weight bare and I’ve always tried to keep a step ahead rather than have a crisis. Do I override him and get suitable flooring in his bedroom with a hospital bed and a hoist before we quite get there as he’s showing resistance or wait till he’s ready to accept it. We are both 73 with only family helping out when they can. I am distraught with what next.

[Gill-C]

i’m sorry it’s so hard And I suspect that we are not always the best patients as we try to cling on to a level of functioning that an objective observer would recognise has been lost.

There are plenty of experts by experience on this forum who will be able to give advice about the best aids to get. I just wanted to suggest That your conversations with your husband also include your needs and that it’s a physical struggle for you.

External advice as to where to go next eg from the MSA Trust, an OT or hospice, a nurse or social worker will support you and perhaps be easier for your husband to hear.

Do look after yourself and reach out for support. Gill x

There

[Kaye31]

from experience and my hubby has just turned 53, we held off hoist etc. I continued to transfer him whilst his legs were like spaghetti under him. It was silly in hindsight and we should have got the hoists much sooner.

The hoist came and we didn’t necessarily use them all the time to begin with but then he got a urine infection and thank the lord we had them.

They are an absolute godsend! My back and neck pain have gone, he feels safe and they are white and discreet

Go for it!

[Yanno]

I fully understand your husband’s reluctance to move to the next stage of care however I agree with Gill and Kaye, you have your own health to look after as well.

We used to plan for the worst and hope for the best in every situation.

On a practical note, our physiotherapist and OT were very helpful in deciding what additional equipment was needed. I suggest you involve them.

Take care, Ian

[MrsDoodah]

I'm so very sorry you are struggling with this. It's so difficult when the man of the house becomes dependent on the female, as there is normally the factor of weight and strength to take into account. My husband was a strong big built man and I struggled physically to transfer him and hurt my back and shoulders many a time. It was a heart to heart conversation, explaining how I was concerned I would hurt myself and would therefore be no good to him, that changed things and led to us getting in more equipment and help. He hadn't really thought how it was affecting me (although he had always been the most considerate and loving husband), only that he was losing his independence and wasn't the man he was and wanted to resist aid as long as possible. Things were so much easier for us both once we made the move and we both wished we had made the decision earlier.

Take care of yourself as well as your husband.

Best wishes

Maureen

[Lassie1331 in reply to MrsDoodah]

Thank you Maureen. Your input is much appreciated. I fully understand my husbands reluctance to move to the next step of this dreaded condition. He has always been thoughtful and often apologies for putting me in the position of carer. It’s what we signed up to in marriage. I will have a tête -a-tête about my health. We also have occasional support from OT but it’s few and far between. Thanks again

[MrsDoodah in reply to Lassie1331]

It is such a cruel disease isn't it, watching someone you love becoming more and more dependant on you, and also how that makes them feel. My husband passed away just before Christmas and I miss him every day, and there is a big hole in my life, particularly having been his carer for so long. Try to spend as much time together as you can, which can be enhanced by aids and assistance. Do try to get all that is available to you. Thinking of you both, Maureen

[Monkeyfeet1 in reply to MrsDoodah]

Thank you for this advice. I am the patient and only 54 with no other help. Hearing to be considerate of hubby’s needs is really helpful.Lassie1331 thank you for posting- my thoughts are with you both x

[janecbain]

it sounds as if you could do with more support generally. Can your gp or OT make you a referal to more services? It’s worth a try! X

[Ruffner]

Our husbands share more than MSA - we have the same conversations every time we reach a new plateau. He does not want more equipment, more help, or more change. Since I am the one who provides his total care, I feel that those decisions are mine to make. I always discuss the changes I plan to make first, but rarely give him the option. I remind him that we are trying to keep him home for the duration and in order to do that I get to decide what I need to make that possible. So far, everything we have done has been useful and helped. Best of luck to you, Ruffner

[Lassie1331 in reply to Ruffner]

Thank you for your input. It’s always good to know we’re not alone. I do tend to make the decisions too but don’t like to push my husband as I understand it all takes a bit of acceptance.

[Derkie54]

Hello,

It's not easy deciding when you should move on to the next stage. If you leave it too long you could injure yourself and may have to rely on carers.

We have been through many changes with me having to man handle my wife to start with and like yourself using family at times. I think you have to discuss and accept when things have to move on.

We are both in our 70's and as well as the MSA my wife had 2 strokes recently.

We agreed to make more changes and now have a hospital bed in the lounge so L does not feel isolated and a hoist, also in the lounge. Our home looks a bit strange with all this equipment but visitors ( not that many now ) that matter understand.

I feel better now as I can hoist L into her wheelchair and go for a walk easily, it used to be quite a challenge. If you had said we'd be in this position 12 months ago we would have laughed but you really do have to adjust to your new normals as things change.

Take care

Derek

[Lassie1331 in reply to Derkie54]

Thank you for your reply. I think it’s just a bit of acceptance for both of us. Difficult but we know it has to happen. I find this forum useful to know we’re not alone. Thanks.

[20fatcats]

Hi. Our specialist said to go into a wheelchair or else a bad fall could cause concussion or a broken hip. He was starting to have many falls. Have a hoist and keep it aside as if the day comes and you cant get him up it will save a lot of stress. Hospital bed will help you to look after your back also otherwise you could end up with issues too.

[Kaye31]

oh gosh we had this. Jon is now 53.

He was really struggling to weight bear and so the wheelchair became his only way to get around.

Then came the issue of transfer into bed which almost broke my back.

He didn’t want any changes anywhere along the line but I called our OT to assess and within weeks we had two ceiling hoists installed and they have been a game changer. It took the pressure off Jon on transfers and albeit they were up for 3 weeks before he would use it, he got a chest infection and hoists saved us!

We didn’t do a hospital bed, he hates hospitals. Instead we purchased a bed that has back and feet lifts and a tempura mattress which I’m pleased to say we are still in.

Your OT will sort everything xx