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Carers UK Forum • I'm losing him and he's losing himself
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I'm losing him and he's losing himself

Posted: Sun Jan 27, 2013 10:28 pm
by Catja
This is the situation so far: My (now) husband and I have been together for about 20 years, living together for about 14 of those years and married for the last 7.

He's had moderate-severe M.E. for 18 of those years, at this stage we're not expecting miracle cures or complete remission. The best to be hoped for is effective pain control and him being able to manage his energy levels well enough to have some not so bad days. Both of us have more or less grown used to living a bearable life within the limits imposed by the M.E.

The relationship isn't too bad, most of the time we communicate well. There's still just about a sex life in spite of his pain levels.

Now for the kick in the teeth. For approximately the last 2 years, his memory has become noticeably worse, as has his inability to find words for the thing he wants to say (aphasia). He's gone from being able to do and enjoy an OU course to failing the exams.

Standard blood tests have shown nothing abnormal, and the memory disorders clinic have said he's got very good mental abilities etc but definitely patchy memory. Worse than it should be, even allowing for M.E. Worse than it should be at his age (late 40s). He's due for an MRI scan and another appointment at the clinic in a couple of months.

Meanwhile I'm just thinking that I'm not sure if I can really face another couple of decades of him not just having M.E. but this fading memory on top of it. Image

Re: I'm losing him and he's losing himself

Posted: Mon Jan 28, 2013 8:37 am
by crocus
((((((hugs))))))) catja.
Its so hard when they have cognitive problems too. My hubby has aphasia and memory problems, linked to his acquired brain injury, too. It is always worse when you dont know what is happening, or the reason for it, and your mind goes into overdrive thinking about the future.
Hang in there and see what the results of all the tests are. Then you can look at it all and plan the future a bit.
Everyone here will support you.
xxx

Re: I'm losing him and he's losing himself

Posted: Mon Jan 28, 2013 12:20 pm
by Myrtle
Don't jump ahead of yourself, wait for the MRI results.
You can frighten yourself to death looking at the future Image
((((((((((((((((((((((((hug)))))))))))))))))))))))))

Re: I'm losing him and he's losing himself

Posted: Thu Jan 31, 2013 6:14 pm
by Catja
You know what?

Based on how things have been for the last 2 years, I'm seriously thinking about walking away. Except that I'd be homeless and have next to no chance of finding work. Image

Re: I'm losing him and he's losing himself

Posted: Thu Jan 31, 2013 8:55 pm
by crocus
(((((((hugs)))))) catja
I think lots of us have felt like that. Have you had the MRI results yet?

Re: I'm losing him and he's losing himself

Posted: Thu Jan 31, 2013 11:44 pm
by Jane:-)
Hi Catja
I have experience of ME in my family, I know of the unpredictability of the illness and the long list of symptons that affect some ppl and not others. Each day is a challenge and not necessarily the same as the previous. You have done well to care for your husband thus far and no doubt have encountered well meaning and downright thoughtless ppl who question whether the illness even exists or just suggest go do some exercise Image, difficult for your caree but also very difficult for you. I am assuming you know about the ME Association? Don't know whether they'd be able to support you or provide you with any new findings of the illness.
Just throwing an idea in here which may be relevant......has your husband had any new medication in the last two years? My own caree (not sufferer of ME) had different medication which gradually changed him physically and his personality which were caused by side affects of the drugs, after 18mths I'd hit rock bottom and very nearly left him.
Two of my family members with ME have a list of medication that they refuse to take after experiencing bad side affects - I don't mean life threatening but unmanageable, there is usually an alternative drug that can be taken instead.
I send you my support and wishes for the strength to face this difficult time you're going through.

Re: I'm losing him and he's losing himself

Posted: Thu Jan 31, 2013 11:57 pm
by bowlingbun
Hi Catja, I quite understand how attractive throwing in the towel can be. I can still remember, very vividly, two occasions when I felt like just driving away from all my problems. Sometimes the stress and exhaustion are all too much, you are not Superwoman and sometimes seeing your friends doing things which you would love to do, but can't, can be very distressing, especially when you are already feeling low. It is really important for your future well being that you handle the next few weeks properly, not run away, or you might never ever forgive yourself. Whilst you are waiting for the MRI scan, ask for an updated Carer's Assessment, and an updated needs assessment for your OH. There may well be a Carer's Support worker in your area, I have someone I can always call on, just knowing she is there if I need her is great.

Re: I'm losing him and he's losing himself

Posted: Mon Feb 04, 2013 2:38 pm
by Catja
"I am assuming you know about the ME Association?"
I do, and there's nothing they can do for this.

"Just throwing an idea in here which may be relevant......has your husband had any new medication in the last two years?"
Metformin for borderline type 2 diabetes.

Rosuvastatin (aka "crestor") after reporting extremely bad muscle pain while taking Simvastatin for a few months (his blood cholesterol was only 4 or 5 in total, even before taking a statin).

Also, amlodopine (not concurrent with the simvastatin) was added to his blood pressure medication. And in the last two years he's had more migraines, partly caused by muscle spasms and grinding his teeth in his sleep (reduced in the last year by getting him to use a boil & bite mouthguard)

Crocus, the MRi is due at the end of February, and the results won't be interpreted before the end of March when he's next due to see the memory clinic's consultant.

Re: I'm losing him and he's losing himself

Posted: Mon Feb 04, 2013 5:35 pm
by Jane:-)
Hi Catja
unfortunately I'm not expert on medication and what works for one person causes problems for another. I merely hoped that maybe a connection could be made between new medicine and your OH's loss of memory, I would consider consulting a local pharmasist to see if there are any known conflicts of medication within the combination that your OH is taking. We were referred to a pain consultant who had up to date knowledge of pain medication also was an anaesthetist and he was able to make my partner's underlying/constant pain at a manageable level with additional medication for breakthrough pain. Could you ask to be referred to a chronic pain consultant who will review all the medication taken by your OH and then prescribe suitable pain relief until a balance is reached.
I'm sorry these are only suggestions unfortunately so little is still understood about this illness.

Re: I'm losing him and he's losing himself

Posted: Tue Feb 12, 2013 12:18 pm
by Catja
Re clashing medication - everything is got from the same pharmacist and there've been no comments or raised eyebrows. Also, the GP's surgery has computer software which flashes up highly visible warnings when dangerous combinations of medication are attempted.

A pain clinic would usually be a good idea, but it'snot an option this time. 1) The nearest one is run by people who take the all in your head view of M.E. 2) It's winter, my husband's least mobile time of year even in a good year. He just wouldn't be able to get there without any benefits of it being negated by the exertion.

I was assessed for counselling yesterday. First the good news -
1) £1 per session for up to 16 weeks
2) the counsellor will see me in the afternoon (a more convenient time for me)
3) she's got quite a bit of experience with carers Image
4) I was deemed suitable for it
5) the assessor won't be counselling me.
Now the bad -
1) the assessor was dressed like somebody out of a letter to a lad's mag, with body language to match. I'm very far from being a prude and I really did try to look at her face, but given the low chairs etc nearly everything was on display. Image
2) she used "depressed" in the colloquial sense - I'd expect better from somebody trained in this stuff.
3) she was sniffy about my not having done any paid work in all the time (18 years) that I've been a carer.
4) fixated with paid work
5) had the bad manners to show surprise that I'd got as far as getting a degree in languages
6) seemed surprised that friends & relatives drift away when somebody fails to regain health
7) fixated on why I'm not registered with a GP (paperwork)
Image intrusively rang me this morning to nag me about getting registered.
9) fixated on my risk of self harm in spite of that being something I've never done.