RLT:

your blog made me cry and realize some of us are fighing real hard battle. now I can see how this life must be trying for you and your husband, no wonder he wants to finalize marker on his grave.

but spring is here and we better enjoy each new sunny warm day.

Asha

RLT,

Wish I had words of wisdom or advice to offer to you. As a survivor and as one who prestroke was not a full-time caregiver, I would not even remotely be able to offer any expertise or thoughts. What I can give you dear is (((hugs))) and letting you know that I heard and was deeply moved by your words.

Bless you.

Ruth, slow down, you are heading for a breakdown my lass and that is not good. Of course you are going to collapse when you have used up your last ounce of energy, count me in there too. I slept for the first two days at my daughter's place, same reason, too much to do before I left, no energy left over.

About volunteers, when someone asks what to do answer with a question: "What do you see as a priority?" then ask: "Is that what you want to do?" if the answer is "yes" you say: "Well go ahead and do it then." This is your opportunity to get your yard cleaned up and some of your worries will end here. I had my Lions Club members clear my yard for a driveway in 1999, without that nothing would have happened. I still feel blessed that they showed their appreciation for Ray in a practical way.

I need to get a cemtery plot too. I must go and do that. It will be one more job ticked off my list. $3000 is a lot of money, so is that the headstone as well or is that seperate?

There is a need to finalise some of the things in both our lives to release our energies for the things that really matter and I agree with the girls, that does mean trips to the mall! I have to remember Trev needs some of my time too. I give up a lot to mind the grandkids but forget beacause Trev is single doesn't mean he should miss out on special time with his dear old Mum.

Just take each day as it comes along. Ray took three pairs of pajamas into his room, put on one and put the other two under his pillow. The next night he complained that there were none in his drawer. Oh my dementia is such fun eh?

((Hugs))) from Sue.

Thanks all for the encouraging words. I really appreciate them in a special way just now.

Sue, about the cemetery trip - the $3000 was for the cemetery marker alone. It is just one of those flat bronze markers not a nice stone. The cost for burial is outrageous!

When crisises happen going to the Mall to try on prom dresses goes way down on my priority list. I do realize that the girls need to have a life too. That is why I drug all of us out for an evening and did do a run to the mall. But all that leads to another frustration.

One one hand I want my young girls to have as "normal" life as they can have. I do not want them to miss out on being teenagers because they have a sick step-father. Other times though they are the only ones who are available to help with my husband. As part of the family I do think they should be helping. It is that balance that is always difficult to maintain.

The only way to stay sane with dementia in the house is to have a good sense of humor. Any shirts that are in the laundry have been stollen!

Ruth, hang in there. As I go through my life day-by-day I think of people like you and Ann who are struggling with the same issues. There are many thousands of women in each of our countries who have stuck with their husbands and are making the best of life with a partner who is post-stroke and now suffering from dementia in one form or another.

One thing about being a caregiver is that dreadful feeling of being the one, the isolated, lonely one with no-one else who really understands. Being on this site has taken a lot of that away for me and I can feel okay about what I feel, my thoughts, my outward expression of that.

Just remember we only give our ideas of what you should do and like an all-you-can-eat smorgasbord you only put on your plate what you can manage...lol.

(((Hugs))) from Sue.

Dear Ruth,

I love your title.........running on empty..........How many times do we do that? Some days are better than others, for sure. I am always surprised when one day is nothing like the day before.

You certainly do have your challenges working with the VA, I know. It seems as though we never go to the VA when I don't have some words with one of them there. I know I am known as a pain in the keester. Bill takes so many meds that getting what we can from the VA saves us nearly $1000 each month, so I don't want to abandon them altogether. The various departments have really helped us, but the physicians have really been a struggle. They only schedule six month appointments, and those appointments are intended to last 15 minutes. It has been our experience that a PCP has spent 15 minutes reviewing medications, then referred us to the pharmacist. Almost as an afterthought he listened to Bill's heart and took his blood pressure - announcing it was time for him to see the next patient. HOWEVER, this same doc was very indignant and insistent that he needed all his "outside doctor's" notes since he just wasn't sure those doctors really know what they are doing...........

The most difficult conversations Bill and I have had have been about death and dying and the plans that need to be made. I've always said I know my husband won't live a long time - but when he's sleeping he doesn't look sick and I almost imagine when he awakens he will be "the old" Bill. We all tell ourselves what we need to hear in order to continue to do what we do. I never imagined our life to be this way, and now I can't imagine our life any other way.

The most I can say to you is that you are in my prayers and my thoughts. It is so hard to stay into today - but that is what I really have to do in order to keep what little bit of sanity I think I have.

As far as the marker goes, with any luck at all he has forgotten about it. Although it seems like the things we'd like them to forget about they don't. We haven't gotten our plots yet. And here is the awful part. I have to come to grips with even doing it. We have agreed we don't want an open casket, in fact my preference is cremation. I don't really want to think of people standing around my casket telling the family how "good" I look, or what a good job the undertaker did.........and honestly, I don't want to hear it about my husband. I want to remember him alive - not in a casket. Now, I know this is a controversial subject - but that's just this crazy woman's opinion. Bill has said he feels the same way. Of course, we haven't told the family and have no idea how his son will feel about it. But again, that's getting way ahead of today!

So, friend of mine - grab a cup of tea or coffee and take a few minutes for yourself. You are in my thoughts and prayers.

Love,

hi ruth.

sending you lots of warm thoughts hugs and prayers.

anna

Ruth, My heart just aches for you and all you have dealt with recently. I don't have advice, except to try and find some time to recharge - like Sue said, this is the time to take people up on offers. If the don't offer, then ASK. I wish I could send you a day of rest in a bottle that you could take as easy as a pill. However, if vitural hugs help, then I am hugging you right now.