Hi all. I have missed you. My dh who as you know has "mci with probable progression", plus ms has just returned home from 12 days in the hospital with heart failure, kidney failure and atrial fibrillation. He never had any heart problems before or kidney problems. They don't know which caused what and getting them to give me a prognosis is like nonexistent. (You know it is not good when grown dr. men give you sad looks like puppys.)
I am just now being able to write without shaking...I am past crying. When my husband was diagnosed with ms many moons ago I cried for two days until he said with some annoyance that he is fine now and we should focus on that. I worked my way through school as a nurse's aide so I saw only the worst cases of ms (and only one of them had cognitive impairment). The drs. then said it is lucky he is a lawyer it shouldn't affect his work. ha ha. After watching him lose his physical abilities through the years. He can still walk, slowly with a walker... he was a tailback in college football. I adjusted. Then a few years ago I realized he was losing his mental abilities, finally the drs. agreed and he "retired" a year ago. I was adjusting to it slowly (kicking and screaming).
Now overnight he has pretty much become medicatedly alive. My brother and fam sent him flowers and he looked at them confused and said what are these...I said flowers and he said but why? I said you just spent 12 days in the hospital trying to die and he said I did? He is gaining some of his strength back....and we are scheduled for many return dr. visits... life does go on
Welcome back. I am dealing with my husband's multiple medical problems, physical disability, and mental decline, so I can honestly say I know how you feel. I was just like you - I adjusted to everything kicking and screaming. But - you know what - whatever is going to happen is going to happen whether we kick and scream or not, so I have found it's just better to accept it as it comes.
There is no doubt that this is a horrible situation, but with support from each other, we'll get through it.
Same here. Yesterday a gal from an agency was here to set up Caring Partner for DH..who said he doesn't need one..and I found out that that person will just come and sit and visit maybe once a week but they don't do things like take him for a blood test or hair cut... They also provide Peer Counseling for me so I have someone to talk with, to help sort out feelings etc. Questions were pretty detailed to include am I suicidal or homicidal etc..do you have a doc ( me no not yet but looking) DNR Power of attorney etc... I don't know what value this will be.
The lady asked DH how many years we have been married...he said well we got married in 77 and it is9_ so I guess 20something...big step down..he was always strong in math but no longer...
grendelsma, i am sorry to hear of the declines and your hospital stay. i hope you have an easier time of it now hes recouping strength. we are here to listen if you need support.
grendelsma, how horrible that must have been for both of you..... Too much for one couple to have to endure, I am so sorry. I am glad he is regaining some strength, and I hope they are able to find what triggered all of this. I also hope you will have help taking him to all those appointments. God bless you both ♥
I am sorry and I hear you. H is 52 and has a seizure disorder in addition to MCI that progressed to FTD to EAOD to general cerebral atrophy, back to FTD and now to AD, which I can't quite get because of his age.
I have not adjusted well.
"Getting them to give me a prognosis"...
I can underline, bold and do whatever to that...How can I plan if I don't know what to plan for?
I have read so many articles about disclosure re px but it still leaves me basically nowhere, because they either will not, or cannot share this. Even if one does, the others will have differing opinions.
Grendelsma, I think you and I have a lot in common.
My DH also has MS. Last year was the worst ever for him: 5 hospitalizations, starting in January when he had A-Fib. He was also diagnosed as having renal failure during one of his hospitalizations. The last time he was in - 5 days at the end of October - they called it Coumadin toxicity.
He has so many problems, they can't always put a name on it.
This is a second marriage for both of us. When I first met him, he told me upfront that he had MS. He had no symptoms at the time. After we got married, things progressed slowly, then all of a sudden it was cane-walker-manual wheelchair- scooter-electric wheelchair. I knew it could happen ... and I accepted it [though not without tears and anger]. But I was totally unprepared for any cognitive impairment. DH also had to retire, but more from the fatigue with the MS, rather than the cognitive issues.
It's all a bit overwhelming for me. I am praying 2012 will be a much better year for both of us.
ms. magic,welcome to this website....I am sure you will find helpful information and support from the members here. I am so sorry you have to join us. My dear husband (DH) was diagonosed with frontal temporal dementia (FTD) in October 2008 at age 58. I would say he is now in the moderate to severe stage of dementia at this time.