Caring difficulties

My husband was positive and sporty until he retired at 65. He belongs to "the only real work is paid work" fraternity and so he took not earning a salary badly. I tried to encourage his various interests but in vain. He wanted a new career which would bring him attention, if not a salary, and he found one. Since 2011 we have lived in a medical crisis of some description. He has Crohns, which actually gives him very few problems, and Type 2 diabetes which he manages badly, if at all. In 2016 he had Lymphoma for which he received chemo and he has been in remission since  2016. Then he decided  he wanted an operation, a  hip replacement. The doctor said no, not necessary. So he decided he wanted an NHS mobility scooter. The doctor said there was nothing wrong and refused, so he went out and bought one. He "collapses" from time to time but doctors and hospitals can never find anything wrong. He is a stubborn "my way or the highway" person and refuses to follow medical advice on  diet snd exercise, often causing himself dehydration,  so he has become weak and unsteady and has lost muscle mass. Now he has cancer of the tongue which is being treated with radiology, but he is in full bed ridden invalid mode which has perplexed his medical team and I really am at the end of my tether. Half of me feels sorry for him but the other half wants to scream in sheer frustration because he is ruining both our lives. He insists I must keep well as I need to do everything for him. If I don"t it simply results in another "collapse" for which yet another hospital will find nothing wrong. Please, can anyone tell me what might be the best way forward for us, because the situation has become incredibly difficult for me to handle.

Parents
  • Hi Chessen, very sorry to hear about the difficulties you're having caring for your husband. My husband was similar in that he could be very stubborn and also had been very active until his lung cancer diagnosis. I understand the feeling of wanting to scream in frustration. I felt that the world seems to be going on around you whilst youre stuck in this difficult situation. I was just saying in another post about how when my husbands walking became affected it all went downhill. his mood changed and it became very difficult to motivate him to do anything and he found little joy in doing things he used to enjoy. One thing I did find helpful was he had a best friend who would come round once or twice a week. That would help brighten his mood and also give me a little break. Id go out and have some 'me' time and recharge. I also just had a thought, i dont know what medical teams your husband is under, but our palliative care team were simply amazing and offered a lot of support. Almost wished theyd been involved sooner as they just knew what to do. I also recommend what Ben said about Macmillan, I spoke to them a fair bit during the whole cancer journey and they gave lots of great advice and could also suggest and signpost me for additional support. I really hope things improve for you both x

Reply
  • Hi Chessen, very sorry to hear about the difficulties you're having caring for your husband. My husband was similar in that he could be very stubborn and also had been very active until his lung cancer diagnosis. I understand the feeling of wanting to scream in frustration. I felt that the world seems to be going on around you whilst youre stuck in this difficult situation. I was just saying in another post about how when my husbands walking became affected it all went downhill. his mood changed and it became very difficult to motivate him to do anything and he found little joy in doing things he used to enjoy. One thing I did find helpful was he had a best friend who would come round once or twice a week. That would help brighten his mood and also give me a little break. Id go out and have some 'me' time and recharge. I also just had a thought, i dont know what medical teams your husband is under, but our palliative care team were simply amazing and offered a lot of support. Almost wished theyd been involved sooner as they just knew what to do. I also recommend what Ben said about Macmillan, I spoke to them a fair bit during the whole cancer journey and they gave lots of great advice and could also suggest and signpost me for additional support. I really hope things improve for you both x

Children
  • Thank you for your caring and helpful reply. We do have MacMillan involved and they are very helpful. My husband doesn't really do 'besties' or much socialising, but the idea is a good one and I will see if I can find someone with whom he would just like to chat. It is so hard when they are stubborn and it's  "my way or the highway."  Wishing you and your husband all the best and hope he recovers x