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New Member

Date Joined Jun 2009
Total Posts : 2
   Posted 6/24/2009 8:00 PM (GMT -6)   
Hi, it has been a long, long time since I have visited a fibro forum.  I feel so guilty for not doing more than read and watch TV.  But I am caring for an 89 year old husband with dementia, dealing with the crap that goes along with it, which he can't help.  Recently moved from a high rent mobile home to a small two bedroom apartment that we can afford and have money left to go out to eat once in a while or buy some books.  After geting mostly settled, I am so exhausted that I look at the things I used to do, quilting, bead stringing, and genealogy, and don't want to do it anymore.  I am 67 years old and am not ready to call it quits, but after doing what needs to be done during the day, I am so exhausted and hurting that all I want is my recliner, stack of books, and TV.  Taking care of my husband is the most important thing to me, and I know it is going to get harder as the dementia progresses and he is less able to do things for himself.  So why do I feel guilty?

Regular Member

Date Joined Apr 2009
Total Posts : 179
   Posted 6/25/2009 12:42 AM (GMT -6)   
Hi Mohawk and welcome! Jeez, I am definitely with danib -- please give yourself credit for what you do instead of beating yourself up for what you can't! I am 66, raising a grandchild who is now 11, and I honestly don't think I could do what you are................ I do think our age bracket comes with built-in guilt -- some sort of work ethic that makes us think we have to do more and more even when our body says to forget it! Anyway, I honestly admire you so very much for the care you give your hubby.............. Bless you.................
Hope you post again soon.......... Lots of really caring and supportive folks on this forum............. we're there for each other and, now, for you, too..........
Dx: FMS,OA,depression,anxiety,DDD with 7 herniations so far,HTN,IBS,cardiac
stent,failing aortic valve,angina,migraines with aura,many surgeries,+misc.
Rx: Nifedipine,Atenolol,Enalapril,Simvastatin,Levothyroxine,Cymbalta,Bupropion,
Dicyclomine,Lorazepam,Darvocet,Percocet,albuteral inhaler,nitroglycerin,+
( novice with computer - patience, please!)

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 6/25/2009 9:23 AM (GMT -6)   
Hi Mohawk and welcome to the family. I agree with the others, what your doing is very stressful mentally and physically so give yourself a break. I'm not quite as old as you but I guess it was instilled in me growing up on a farm that you work from sun up to sun down and I have had a very hard time giving that up without feeling quilty but when the body just won't go anymore there isn't anything we can do about it so we need to let the old ways go.
I'm glad you found us cause this is a very understanding group of people. Read the fibro 101 thread, second on first page, it contains lots of great info. We will be here for you.
luv and hugs
Forum Moderator Fibromyalgia
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MT Lady
Veteran Member

Date Joined Jul 2008
Total Posts : 955
   Posted 6/25/2009 9:36 AM (GMT -6)   
Hi Mohawk,
Welcome. I certainly know what you are going through. My mom was diagnosed with Alzheimer's 6 years ago and I moved her in with me, to care for her, while I worked a full time job. People simply don't understand what it's like dealing with dementia, from an emotional standpoint, watching your loved one disappear before your eyes, dealing with the day to day, moment to moment changes in personality, going from confusion to clear mindedness, the memory problems, the constant repetition of questions. I cared for mom for a year and then just burnt out. I thought I could do it all, but I broke down emotionally as well as physically.

I was diagnosed with FM over 20 years ago and that probably didn't help, but it's difficult for anyone to care for those with dementia, at least when they are a family member. Mom now is in an assisted living facility, she is 87, and loves it there. I have two sisters and we visit every day, at least one of us. She has activities which stimulate her and now my time with her is quality time, loving her.
I wish you well,

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.

New Member

Date Joined Jun 2009
Total Posts : 2
   Posted 6/25/2009 10:07 AM (GMT -6)   

Thanks to all of you who responded.  All your responses made sense and made me feel a lot better about the situation.

I realize that I need diversion, and have picked up on my genealogy research again.  But it is just for me.  I was trying to push it to put together a book for my siblings and cousins.  I don't need to do that, most of them are not that interested anyway.  I will work at my own pace and if a book eventually comes out of it, that's okay.  Mainly, I am interested in my ancestors and learning about some of them is fascinating.  Like the Loyalists who went to Canada during the Revolutionary War, another on a prison ship in New York Harbor, and another ancestor killed by Indians.  Who knows what will turn up.

Now that my apartment is pretty well organized, I can begin to take care of me.  Getting back to some exercising and stretching, and getting out to walk more with my husband, which is also good for him.  I am beginning to feel more positive, and your responses have certainly helped!

I will check in here two or three times a week, I know I need to keep in touch with those resources that are helpful, and you certainly have been helpful.

Good thoughts and prayers for all the fibros who are hurting.

Forum Moderator

Date Joined Apr 2005
Total Posts : 17059
   Posted 6/25/2009 10:41 AM (GMT -6)   

Hi, Mohawk, and welcome!  You have gotten some great advice.  You probably are dealing with some depression, too.  Watching your husband decline could surely do that.  That can make you tired.

Try doing things for yourself.  You spend all day helping your husband but take time to help yourself, too, or you could burn out.  Also, try to keep moving, if you aren't already.  Maybe get a walking in place video and do that and have your husband join you, if he is physically able to do that.  It could be fun and something you are doing together.  The exercise could help with your low feelings right now and you would be doing something to help you.

I'm sorry you are going through such a tough time.  I took care of my mother after she had a stroke and it isn't easy.  Dementia, I think, is a worse problem to take care of.  It is physically and mentally draining. That's why you need to think of yourself, too. 

Have you looked into visiting nurses?  Mom's Medicare took care of that, if I remember correctly.  They would come in and bathe her several times a week.  I'd leave the room and have some time for myself.  So, you might want to check to see what Medicare would cover that could give  you a hand.  There might be some community agencies, too.  I never looked into that.  Mom's mind was was just her body that fell apart.

I am so glad that  you found us and joined in.  Please take care of  yourself.  I hope to hear more from you soon.


Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

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