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I'll start posting here since I've introduced myself already.

Husband has been having sleep and fatigue problems. Sunday he slept a good 4 hours during the day and 10 hours that night, yesterday he slept another 6 hours during the day, and last night slept well until 4:30 am then dozed off and on. It's not even noon yet, and already he's had two naps - one for 2 hours, and he just went down for his 2nd nap.

A good part of his problem is that he takes so many medications, and so many have a tranquilizing effect, that I'm fairly certain he needs to get them rebalanced. Unfortunately, he has so many doctors (partly due to myriad health problems, and partly because he keeps trying to get referrals out of our HMO system) that getting them all on the same page would be difficult. Plus, his depression is still not managed yet - Sunday he said he had a terrible downward mood swing - but I am hopeful he will find a therapist soon who can at least help him learn to deal with everything.

As for me, I'm hanging in there. My father visits this weekend - he always stays in a motel and is a piece of cake as far as entertaining goes so it will be a good weekend, if tiring for me. A couple of months ago I also started trying to form a Ya-Ya group (women's group, just to get together with other women for the fun of being with other women) but haven't been able to carry through with it. I did have five people express interest, the thing that's holding me back is my own fatigue and not wanting to take on another "duty". I'm hoping that once we've had the first get together, someone else will take on organizing the next one, and so on.

Every once in awhile my husband reminds me that he wants to die in this house (well, condo) and that an assisted living facility is out of the question. I understand how he feels, but there are moments when I think it would be easier for us both if he did go to one - he'd have the round-the-clock care and attention he needs, and I'd have a chance to breathe. Of course, I know that's just my tiredness talking, but there are times when I would like to have some REAL alone time. Unfortunately, as long as he's here in the house, I know I will have to be on "alert", unless his aide is here - which is right about the same time I have to be at work. So I really DON'T get any "time to myself" until after husband goes to bed, and lately he's been calling me for additional support - turn off the window fan, re-install his earplugs, etc. so just as I get comfortable I have to get up and tend to his needs.

I wish there was a care-givers support group I could go to, but none of the ones here in the Seattle area are at a good time or a good location for me. (Not owning a car is a handicap at times.) If there are any care-givers in the Seattle area who would be willing to meet on Sunday afternoons, that would be great! I really need to find a way to get a break from...well, life, I guess... because the unending pressure is getting to me.
It will only get better
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Hello Caircair... sorry to hear you and hubby arent on the same sleep patterns.. I thought you said in your last post that he has a psychiatrist or someone that could counsel him as well as give him meds for the depression.

I know it becomes so difficult balancing it all, especially the doctors and the different meds. However, our intuition is usually justified and as tiring as it is, it's important for you to advocate on his behalf and really approach the doctors to discuss the meds and the possibility of different reactions. some can be making hubby more depressed than normal, tired, etc. Sometimes its great to talk to your local pharmacist as they deal more with reactions then doctors do a great deal of the time.

The group sounds great... something you probably all need and it would be great to delegate and have different people be responsible for each meeting.. sharing is wonderful.. being with others is impt as well for you.

Try to see if there are any volunteer programs in your area... where a volunteer could come in and relieve you so you can have time for yourself and hubby can be with new people...
They have remarkable programs and their volunteers are trained... I found one specifically in Seattle and there are some probably in the suburbs... they might be able to link you to support groups as well... check it out atL

http://www.fianationalnetwork....rograms.cfv?state=WA

and let me know how you made out...

there are some support groups listed at this link

http://www.caregiver.com/regio.../WA/support/king.htm

check them out.. and always ask if they can recommend...

Washington State support group directory can be found at

http://www.counselingseattle.c.../support-group.htm#C

if you just search the following phrase in google a myriad of information and programs will pop up... you are fortunate there are many in your area that you can probably take advantage of...

hope this helps..

blessings in all you are doing

gail
Hello Caircair:

It has been several years since my father passed away but I still remember the sleepless nights... Caregiving is so stressful and there is very little thanks at the end of the day.

Your idea about forming a support group is a great idea but could it create an additional burden? Do check out the different resources that Gail suggested. There may be something available that may suit your needs without making a commitment. Either way, a support group is essential to a caregiver.

King County, WA does have some events that may be of interest to you. Here is a website: http://www.agingkingcounty.org. If you click on the "Events Calendar" you may find something of interest.

My father, like your hubby, would not consider any kind of facility. I cared for him for six years following a home invasion in which he was injured. It wasn't long after that incident that he was diagnosed with cancer and was successfully operated on. Regardless of the successful operation, he came home on hospice due to other factors. To make a long story short, he survived that first hospice experience in 2003 and then passed away on hospice in 2006.

My mother, on the other hand, will be celebrating her 92nd birthday this October. She was proactive in her elder care and settled into a very nice facility seven years ago. She has her own apartment and they clean it once a week and provide two meals a day. Also they provide darling cottages for couples if that is a consideration.

Here are two links:
http://www.foundationhouseng.com/
http://www.brookdaleliving.com...-of-federal-way.aspx

One thing I can say is that I am grateful for my mother's decision not to "be a burden on her children". I often wonder, knowing what I know now, if my decision to would be different regarding the care of my father. It has been the biggest life-altering event of my life! It is okay, Caircair to consider all your options.

Anyhow, enough about all I have gone through. I just hope this is helpful. We do know, here at the site, the physical and emotional challenges you are up against. Remember to take those deep breaths and try to focus on your priorities when you can. We are here for you!

Hugs, Glenda

[This message has been edited by glenderella (edited 09-29-2010).]
Hi, caircair.

Boy I sure do hear you about the out of whack sleep patterns. That's a constant thing here. I get cranky if my regular sleep is interrupted, so he tries really hard not to wake me during the night. But if he's having a bad night, then so do I.

You sound as though you have a handle on all the common sense issues. Gail's idea about talking to a pharmacist is good. You can get a better idea about which meds are safe together or likely to contribute to some of his problems.

My hubby takes so many heart meds that I have to split them up into which are daytime and which are for after supper, so his blood pressure doesn't go too low.

Something that may help when you do talk to the dr's is having a list of his meds and OTC's in a spreadsheet:
Brandname; generic; dose; when taken; why he's on it; refills remaining.

On ours, we have a comment section for current complaints and questions -oh and allergies in bold print. I update before each appointment and keep an extra in his wallet for emergencies.

I sure hope you find the support and respite that you need. Sending positive energy your way...

Hugs,
Barb
Based on the replies I've had (and thank you, it really helps knowing there are others out there who understand!) I want to clear up a little confusion. Husband's body is breaking down, but husband's mind is sharp as ever - which is, in a way, a curse since he was once a member of Mensa. He has the intellectual capacity of a very smart man, but sometimes his emotional capacity is that of a child and it's the emotional component that's wearing me down.

One habit of his - he tends to be rather negative, which rubs me the wrong way, since I try to stay as positive as possible (being negative takes too much energy). Right at the moment I'm tired (neither of us slept well), grouchy, achy (stupid backache!) and out of sorts. Only moments ago I said to him "You know, sometimes your negative attitude wears me down." Then I added "But that's not your problem, it's my baggage. I'm the one who needs to adjust my attitude toward yours." At least now he's aware (re-aware?) that his mood also affects mine.

As for his fatigue problem, we are waiting for permission to go outside our HMO for a Neurologist to review his medications - it seems to be his seizure meds that are causing the bulk of his tiredness, and the HMO Neurologists aren't making any effort to help him. He's noticed that about an hour after he takes his meds, he completely loses energy, then needs to nap for a couple hours. He's (we're) going to try a new tactic - he'll get up at 7:30, eat a light breakfast, take his morning pills, then go back to bed. Meanwhile, I'm going to set up his breakfast/pills/drinks, etc. before I go to bed. I'll get up by 9:00 am, since his aide will be here around 9:30, and he'll get up around 9:30 to 10:00 am. We'll see how this new schedule goes, and if it doesn't work out, he may just have to start going to bed very early.

Oh, and Barb, we already have a spreadsheet with all his info - medications, amounts, times taken, allergies, health problems, and even his medical ID numbers. He's had one set up for years and we update it whenever something changes. We keep current copies around the house, and whenever the EMTs would come for his panic attacks I'd print out new copies. Of course, now that my printer no longer works with my new computer, that's not doable anymore.

Also, I have checked all the links that were mentioned - unfortunately, because my work schedule is so weird and because I don't drive, none of the meetings were available to me. I'm still hoping I can find a phone support group or a chat group. But until then, I do appreciate all the support I'm finding here. Once my job duties change I think I may feel more energetic (I hope.)

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