A new 'twist '

Marian_2August 24, 2005

My story is something I have not read on this forum .

I am the one who may soon be in need of a care giver .

I am 72 , will be 73 in November .

My husband will be 79 the 31st of this month .

I have had Fibromyalgia for many , many years . It not only effects the body , it effects the mind . I am very intolerant / sensitive to many things , including sounds .

DH has had light strokes and a couple of heart attacks . He also has back and leg problems . He still gets out and cuts our own firewood . That is his main activity . He still is completely able to care for himself . ... but he apparently has some dementia .

He stopped driving at least 10 years ago , except in our woods , and up to the neighbors .

I have all the responsibilities .... the yard , the house , the finances , the shopping , etc. etc.

Now , back to my sensitivities . He has developed the habit of making strange noises with his mouth and tongue . My computer is right behind his chair . The noises drive me up the wall ! ( He is also a noisy eater , and does most of his eating in the livingroom ( where my computer is ) . If I have the TV on it sort of blends in with the noises . But there is so little that I care to 'watch' on TV . If I play my stereo records , that helps too , but I think it annoys him ! I bought an AM FM Stereo Cassette player yesterday , with earphones . I haven't tried it yet , and don't know if that will help .

I'd really like to have my computer set-up moved to a much farther location , but that is not very feasible .

Why am I posting here ?? Because I would like some understanding and support from anyone who may understand .

Don't suggest that I discuss it with him . He has developed a very short fuze ! ( He never has been able to accept criticism .... we have been married almost 48 1/2 years , and I know all his quirks . ) His mental deterioration has caused him to have even more irritability . I do not think he realizes his mental problems .

I am having mental problems too , espacially short term memory . Perhaps you with parents who have such problems can give me advice . I am open to suggestions and reasoning .


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I am sure that you know it's time to start making arrangements. Think about what would happen to him if you had a heart attack or stroke. Does your Church help support a home for the elderly or infirm?
There are those of us that are even older than you are, and I assure you that we understand what you are going through. Can you depend on your son to make the RIGHT decisions for you and your husband? You need to be sure that he understands your wishes.

    Bookmark   August 24, 2005 at 1:09PM
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:) I come from a family of lip-smacking, denture-popping, mouth-music making folks, and 'disconcerting' isn't a bad way to put the effect it has on me...

especially coming from people who fussed over my table manners while I was growing up ;)

isolation can drive a person batty- even if they weren't particularly sociable to begin with... so talking to your family doctor about evaluating the root cause of your husband's dementia may be in order- sometimes, it's as simple a cure as a b-vitamin shot. usually it's not- but I'd want to know if it was organic in nature, trauma from the strokes, or what if I could.

and as a depression survivor... no, even on the rare occasion we realize that we're under the influence of strangeness- we rarely realize just how off-kilter we are, much less that we are the root cause of the conflict we just created.

depression is definately an issue that's under-addressed as strong, capable people's bodies start to come apart, and the world moves on without us- I'm not 40 yet, and I feel it, and some of the best talks I've had with my mother (78) are about just that-about trying to reconnect in a world that's gone a little batty all by itself (she says it reminds her of the 50's, with the witch hunts and the political situation and the economic pressure where people were going hungry while the government was talking about propperity)

and then there's you... one of my best friend has FM, and the disease fascinates me- though I refute the title, like I refute 'post-traumatic stress disorder' for the more literal 'shell shock'

I call it what the Victorians called it- Industrial Disease.

and lucky you- you're living with a housemate who's as much use as an 9 year old...

which doesn't mean that he can't dry while you wash, like old days- but getting help out of him means learning to use his quirks to your advantage, and that's something most decent women are loathe to do, eh?

have you read any of Mari Skelley's books on living wit FM? how good is your doctor(s), do you think you're being treated properly?

:) yes, I ask- like I call my mom's GP on a regular basis, and want to know how things look from HIS end.

    Bookmark   August 24, 2005 at 1:33PM
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Yes , Froggy . I have been considering the arrangements for sometime . He is a veteran , so can go to their nursing home if need be . Our congregation has no such support , except for individual help . There is Home Care for the qualified from the state ( I think that's who funds it . )
BTW , It has been suggested that I may have had at least one TIA . I have very high blood pressure . I'm taking a diuretic for that .
Our son lives too far away to be of much help . I think he understands my wishes . DH has never expressed his .

I am still quite capable of taking care of things , but am well aware that that can change very suddenly . I cook breakfast every morning , and a noon meal . We snack in the evening .

Actually , my biggest concern right now , is maintaining my sanity in connection with his deteriorating .


    Bookmark   August 24, 2005 at 1:43PM
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Hi Marian...Welcome aboard! I think that the cassette player will help you get some little breaks. But I agree that I would look at the bigger picture....It is good to have that safety net in place. Also, how much time away are you getting? Everyone needs diversion from everyday irritants. Get out and away while you can! Does he get out? "Home Alone" can be very nice once in a while!
Anxiety can also be a factor. Having plans in place will help diminish that normal anxiety about the unknown..the two of you have a "community project". Good luck! Derry

    Bookmark   August 24, 2005 at 2:01PM
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Oh yeah, Those little personal noises that you hear at the wrong time. No solution to the problem that I know of. About all you can do is cover them up. I'd play the stereo. It may bother him but he may get used to it. Right now, it is important that YOU get what YOU need to get through the day. There's too much on your shoulders to worry about what he likes. Hang in there!!!

    Bookmark   August 24, 2005 at 2:18PM
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Oh my , chinacat . You sure got that first sentence 'close to home ' !
I tried to talk to his doctor about it his mental disabilities . His response " He has to tell me himself what his problems are " !!!!!!! This Dr. got so offensive to me at our last visit ( about a year ago ) we haven't been back since . I tried to get him accepted with the local VA doctor . They said they would get back to me with what we needed to do . That has never happened , and it was at least 3 months ago !

RE ; depression ... this DR. decided I needed on antidepressants because I was upset about my unsatisfactory cataract surgeries . I allowed him to give me some sample pills . They messed me up royally ! I had difficulty walking , driving , talking . When I tried to explain that to him that is when he got so sarcastic to me . It even upset my DH . I quit the pills , but it took about 6-8 weeks to get back to normal .
I am connected with the world . I go to our church services twice on Sunday . I go to the church's Golden Year's Class every Tuesday . I post regularly on a conversation forum (Perennials ).
DH is only interested in going to Sunday's services . He seldom gets out amongst people otherwise .
We live 23 miles from town . He does not care to go to town except to Dr. appointments and to get his hair cut ! He does go up to his cousin's sawmill occasionally , but I doubt if there is much talking there , because they are busy .
Visitors are very rare . People used to come , but I think his manner of talking has turned them off . He loves to talk , but most of it is about things in the long ago past . He can get very radical with his statements about people . Most of the times when I try to talk to him about present things it ends up with him getting very angry , or responding very inappropriately .

Make that a 'house mate' that is equal to a 3 year old when he is at his worse .

HAH ! "Dry when I wash " . He stood on the front steps of our church building and loudly announced that "He never washed dishes , and he never intended to " ! Acually , I don't dry , I drain ! He does 'make' his own bed , and he takes his plate to the sink and rinses it .

I have studied FMS extensively . There is no known cure , and very little help . I took Ultram for awhile , but my pain eased up about 3 years ago , and now I can now sustain myself with OTC pain meds . My biggest problem now IS the 'brain fog' , and fatigue .
I have several friends that have been diagnosed with FMS . We all hurt , but have differing ailments otherwise . The 'brain fog ' and fatigue are pretty universal .

    Bookmark   August 24, 2005 at 2:22PM
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I am using the radio earphone this evening . I rather like it , Derry .

Thanks all for your support . Getting this off my chest has helped , too .

    Bookmark   August 24, 2005 at 8:50PM
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I too have FMS...was diagnosed about 16 years ago and for the most part, I manage it well. I do still have chronic pain, mainly in lower back, hips and legs, so I do take pain meds and meds for sleep. As far as the brain fog, I notice it during flare ups usually caused by a drop in the barometric pressure or mucho stress. Noise can be an issue for me too, but the better I manage my stress, the less the noise bothers me...Mimi

    Bookmark   August 24, 2005 at 11:53PM
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Mimi , I read your thread and see that you really have your plate full !I guess my complaints are pretty minor compared with most of you .
I can get to sleep better on bad nights if I take an antihistamine . One Dr said it would help with the fibro also . I usually use it only when I am contending with tick and chigger bites . I have a rather bad reaction to chigger bites , with welts , and severe itching .
You are so right about the stress , but when you live in a stressful situation easing it is easier said than done !
I was diagnosed with FMS about 8 years ago , but know I had it many years before that . Yes , I still have the chronic pain , too , but not to the extent that I had it a few years ago . A painfree day is as rare as hen's teeth ! My worst is my neck , shoulders and head . I'm hardly ever free of a headache .

Anyway , thanks for your input , and I welcome any more that someone may follow up with . Being supported is part of the 'cure' .


    Bookmark   August 25, 2005 at 5:01PM
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marian- it's not much use, but your doctor needs to be whacked upside the head with the inevitable wooden plaque with the Hypocritic Oath engraved on it.

our GP is overworked, understaffed, and tends to turn to the pharmacy first, last, and always...but he's a good guy, which your doctor most definately isn't.

maybe you should kidnap him, and let him spend a week or two in your husband's company? either they'll get along fine (crotchity old men often do) or he'll be begging your forgiveness in a matter of hours, I think ;)

    Bookmark   August 29, 2005 at 1:06PM
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Thanks , chinacat . That doctor is a crotchity young man . I'm afraid he has taken too many of his precious antidepressants ! ( He told me more than once that he has taken them for years .) He hasn't been in practice for awhile ... there is a lawsuit against him . There is another man filling in for him . When we decide DH needs to see a dr. we will go to the V.A. dr .

    Bookmark   August 29, 2005 at 7:21PM
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I subscribe to "FMS News"...a quarterly newsletter that lists studies that are on-going and has a lot of information on self-help and alternative medicine. I just heard last week that studies are been conducted on acupuncture and FMS and that the results look good.
As far as the antidepressants, a few year's back, the FMS newsletter had an article on Prozac and FMS. It seems to work well in lessening Fibro pain, when taken in the morning and taking Elavil in the evening, which many FMS patients take for sleep. My doctor tells me I'm her "model patient". I've always been very good about exercising, which really helps to manage the symptoms. But, for me, my worst flare ups are related to barometric pressure...those I cannot control at all an the best thing you can do is go with the flow. If I can't control the pain, I try to relax, even if I don't sleep, just try to lie down for 15 mins a few times a day. The less pain I have, the less brain fog I have. The more walking I do, the better I feel mentally (must be the endorphins kicking in), but then I'm battling the pain if I overdo the walk, so it's 6 of one, 1/2 dozen of the other. For me, I find the more I research something that is wrong with me, the better I can manage it. And, most importantly, I see a Rheumatologist 3 times a year who truly understands the disease. She is always open to my suggestions to try another medication...I feel very lucky to have found her. The doctor I was seeing before -- for about 5 years and before diagnosis of FMS...he just said I had chronic back pain-- told me I was addicted to pain meds and would not treat me any longer. He sent me to a pain clinic and fortunately, the pain doctor recognized my symptoms and sent me to the Rheumatologist. I wish you much luck and pain free, fog free days....be well,

    Bookmark   August 29, 2005 at 10:42PM
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Thank you Mimi , I think I am coping pretty well with the fibro . My primary problem is my DH's deterioration . Every time he shows signs of increasing mental problems it gives me rather a scare . Talking about the problem with others who are going through similar ( or have gone through it ) is very helpful . I know most of the answer lies within myself . I have to keep my attitude right ! I sure can identify with others who get very upset with their situation . I have been coping somewhat better since I posted this .
Thanks to all of you .


    Bookmark   August 30, 2005 at 8:07PM
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Hi Marian,
sorry, I just saw your posting. I'm in a different situation than a lot of the others on this list, in that I'm mom/caregiver for a severely disabled child.

Anyway, I thought I should mention that repetitive sounds with the mouth can be a type of seizure activity. Since he's had a couple of strokes, can you have a neurologist check that this isn't some sort of seizure activity? If it is, it might be controllable fairly easily with anti-epileptic drugs.

I'm so sorry for your situation, and wish I could be more helpful.

    Bookmark   September 15, 2005 at 4:47PM
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Thanks Summer . I will bring that to his dr's attention at his next visit .

    Bookmark   September 16, 2005 at 12:00PM
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