My husband is refusing his meds

[ladydog255]

John has finally been diagnosed with PSP. It's only been 4 years! But he is starting to refuse his anti depressants, saying they are causing his headaches. He doesn't seem to realize the PSP effects both of us, and has become very self-centered. Any suggestions?

[NannaB]

This is probably one for your husband’s doctor. It must be awful to have continuous headaches. PSP did obviously effect me as well as my husband but he couldn’t control how he felt, it was the affected part of his brain making him as he was. To start with he took various medications but they all had side effects so within six months he stopped taking any prescribed for PSP with my approval and life was much better without them. I had to adapt, however, as he was incapable of doing so. Fortunately he wasn’t violent but he was very “stubborn “ which wasn’t his fault and couldn’t be changed. This lead to some dangerous situations, A&E visits, bruises, stitches, broken furniture and many anxious moments but he never showed signs of depression. I let him make as many decisions as possible, what he ate, drank, where we went, who I invited in etc. Later it was just by putting his thumb up. The hospice day centre told me I had to let him choose his own clothes to wear every morning and I laughed as he had no interest in clothes and always asked for advice on what to wear daily before PSP.

Every PSP situation is different and I can only say how it was for us. It was a horrible roller coaster of sudden deterioration, gradual changes, messiness, pain emotionally and physically but it was also a time when our love became even deeper. C still loved cuddles and kisses and responded until nearly the end. We still had many happy moments, making happy memories I think of more now he has gone, with laughter nearly every day, His was just a funny humming sound near the end.

I survived by accepting any help offered and seeking more when I needed it. Corvid has probably changed what is available and I feel so sorry for everyone in your situation now. I do hope you can get some time to yourself.

Best wishes.

XxxX

[Yvonneandgeorge in reply to NannaB]

Hi agree with all NannaB said, PSP is such a horrible illness, George was ok with his medication, he was on antidepressants, it was a very hard time for all of us, when I was upset and he laughed, he would say to me I am crying inside, always remember it’s the illness not them, it’s hard at the time when you are so tired for lack of sleep, but Psp is such a horrible illness. Sending you big hugs, maybe try to get the doctor or district nurses to talk to him. Yvonne xxxx

[daddyt]

I've never had headaches with antidepressants - been on them close to seven years now. And, of course, I didn't feel I needed them. The depression and mood swings are better now than early on in the disease, but not 100% - maybe 50 - 60%. Anything on the plus side is an improvement. I think, as NannaB has suggested a meeting between you, your husband and the doctor would be best for the both of you.

Tim x

[Martina_MP]

There are a lot of antidepressant choices so discuss with your doc and have your husband try a different one. He should be able to find one that he can tolerate and feel better on. I had headaches on citalopram; escitalopram was less bothersome; but a totally different drug worked wonders.

[ladydog255]

Thank you for all your comments and suggestions. John gets violent when he's not on the meds, and will be a topic of discussion at our next appointment.

[Hidden]

I hope your next appointment is soon. I know it is a impossible situation right now but John needs to know violence will not be tolerated. Keeping yourself safe is most important... after all where would he be without your care. Sending hugs of encouragement... Granni B

[RolsDutch]

So hard, if like my Dads situation he is having to take so many tablets, we found some reacted badly with each other. It was a juggling act ! He had Statins to prevent high cholesterol which seemed to cause problems . Tbh cholesterol was the least of his worries and he was a Dutchman who loved cheese!

PSP is hard for everyone, having been a carer to the end and only now 13 years on do I feel ok talking about it; I would honestly say give all of your selves big hugs and comfort and try not to panic , worry or get caught up about being rigid with all the physio, appointments, pills and regimented routine.

The cycle of always looking for a my miracle, hoping the meds will make him better really took over and we lost so much valuable time we, as a family, could have spent just enjoying the little things together. Take the time to enjoy things together, go slowly at his pace, talk about things you take for granted , There are so many things I wish I had asked him. What were his favourite sweets, his best cc childhood memory, first kiss, most embarrassing moment. Was he excited to be a grandpa, what advise would he pass on etc etc

It was a terrible disease that took everything from Dad , his laughter, smile, cheeky one liners, joking, dancing and singing- he was so frustrated and scared, giving him his chance to express his hurt, fear and anger inside by letting of steam in a safe way helped me and him. I would say to him how it made me feel, like screaming, shouting, swearing, making rude gestures and we used to do just that, it was rediculous and probably best no one else walks in!

Unfortunately it does take away emotional responses, trapping them away and this can seem self centered. He probably just can't easily express what he's feeling as it will get harder for him and your family every day

Sorry to seem bleak but I found there wasn't much realism and total honesty about PSP when we were caring for Dad. Everyone was trying so hard to be nice and smiling but avoided the reality.

Go easy on yourself and enjoy each other don't let PSP win by taking over everything at this stage. xx