Friends, Family & Carers Forum

[Former-Member]

My husband of 32 years has had acute MH issues for the past 3 years and has proven difficult to diagnose, we now have a "diagnosis hypothesis" which is the basis for another trial medication. I have been told by doctor to lower my expectations in relation to hubby and his recovery; no parameters were given for this.

Despite utter despair at times I feel I cannot hold to anything but defiant hope.

I have accepted the reality of his health deficits and understand that we will need to make lifestyle adjustments once stability has been achieved.

I just don't know where to start.

[pip]

Hi @Former-Member. Wasn't it helpful of the Dr to advise you lower your expectations, but not advise you how and what to do. I would imagine you quite feel frustrated if your hubby hits 'rock bottom' and appears to have little or no energy to fight or start 'climbing' again. Let him know you love him, tell him truthfully you don't know what to say. I would also be guided by his moods and ask him if he wants you to stay or would he be comfortable if you wanted 'time out'. You need to take care of you so you can regain your emotional strength to help him rebuild himself. With his meds, be prepared for some mood swings till his system adjusts. Meds take about 2 or 3 weeks to really start to kick in. Once he has adjusted, note whether the meds are helping by his lifestyle. If he seems to be adapting well, then the meds are working. If there is still fluctuations, his meds may need further adjustments. Perhaps getting more info regarding the meds and likely side effects, this too would benefit. It's possible your hubby will not be able to help you with noting any changes as we can't see how we act to others. To him, he may not be any different, however, you may notice changes either favorable, or not so favorable. Please don't feel isolated in this, that's the hardest part of living with someone with MI. The patient feels isolated, the carer often does too. If your hubby wishes to post, just to 'vent' encourage him to. If you just want to 'vent' same thing applies. Depression/MI is relentless, does not differentiate.

[Faith-and-Hope]

Oh @Former-Member .... I can sooo relate ..... only we are not even at diagnosis yet .... and my hubby cannot see at all that he is unwell, only that a series of unfortunate physical ailments and injuries appear to be afflicting him .... mysteriously .... 

Flagging the doctor is all I have been able to do, but even his hands are tied because he has spent five years encouraging my hubby on this path and praising him to the heavens and back over his results, without realising the Jekyll and Hyde (... hide ... hidden ...) illness was developing concurrently.

Really feel for you ....

🌷💜

[Former-Member]

I have read up and understand how the different medications work and what diagnoses they treat. I understand the different classes of medications.

Hubby does not have a firm diagnosis, in an endeavour to diagnose he is now being trialled on another med (the 13th one he has been given - not all at once). We will not know if this one will work until discontinuation of another med is complete and homeostasis achieved.

Hubby is compliant with meds, does not self medicate and has good protective factors for recovery. Conversely he is poor at articulating symptoms and has multiple risk factors for a poor outcome. It was not until I stepped in and put together a concise history of symptoms and meds, highlighting significant events that things are hopefully coming together.

Therapy has proven difficult for hubby, he cannot grasp mindfulness or the relaxation techniques which appear to me to be a groove the therapists he has seen are stuck in and it always seems to end up with the therapist getting frustrated and him feeling like it has all been a waste of time.

Hubby cannot manage our little farmlet and the place is socially isolated. We probably need to move closer to family but this would involve an interstate move. Am not sure if it would be too stressful at present and I do not have the strength to deal with another treating team until hubby is properly diagnosed and stable. Additionally getting the place ready for sale without a lot of help would be currently impossible.

We are not in crisis mode but I don't think we are really in recovery mode either. Decisions made in crisis are rarely good so am holding off, trying to work toward stability instead.

Have other carers found that moving interstate to be closer to family has been helpful? How has the transition gone with changing medical teams? How stable has the patient been when you have moved?

Appreciate your thoughts.

[Faith-and-Hope]

Sorry @Former-Member ..... I understood you are still searching for a diagnosis .... I hope that happens quickly and well from here ....

We have extended family close by, which will be a support later for which I am grateful in anticipation, but I have heard of others relocating to be close to family for support. If you get on well, that would be invaluable I think.

It is very important that you are supported in your carer role .... Many carers don't understand that until they are burning out themselves, so if you can, please take pre-emptive action by delegating even small things, and accepting all offers of help.

Take care ....

🌷💜

[pip]

Hi @Former-Member. What a dilemma you face daily. So many contributing factors, along with caring for hubby. I really feel it for you. It sounds as though you are treading water a bit at the moment. While you're not in crisis, you are not in full recovery mode either. You sound really wise in your decision not to make any decisions in regards to future endeavours yet. With moving house and dealing with the patient, you ask when it would be safe? Without knowing either of you, only your treating Dr could answer that. Changing medical teams, again that's a 'play it by ear' situation. Your hubby could be a person who responds well to change, or it could knock him back. Often a change in environments has been known to vastly improve the life for the patient and carer. If the family in question fully understand the need to be closer and they are 100% 'there' it can be extremely beneficial all around. There are many factors with moving too, as you say, getting your place ready to sell is full-on. I suggest, at this stage, sit back and examine everything that needs to be done. Your hubby's and your care is paramount. Where are you emotionally at this time? Perhaps getting his needs sorted first, then look at what you have to do to sell. Is there somebody to help you with readying the farmlet for sale purpose. Have you any idea what your place would fetch without putting too much into it? Perhaps get some sort of valuation (as it stands), get some advise from a reputable real estate agent. Most of them are pretty fair once they know the situation i.e hubby's MI, your carer status. Would your hubby be open to visiting respite to enable you to get some breathing space. Sometimes placing patients temporarily in respite can be beneficial for all concerned. Is that feasible where you live? Perhaps making a list would help. I.e respite, real estate agent, medical team etc.