update...and it's not good

[dixie_belle]

Since we had to sell our farm and move, I haven't posted much, I just lurk and read some of the posts. We have been desperately seeking some proper diagnosis for my husband. Finally, after MRI's and EEG's and tons of tests (and a steady decline in his cognitive abilities) we have the results. He has dementia. I can't say I was surprised, because I'm not. I have taken away his driving about two years ago. And I took away the checkbook, too (don't ask). Pretty much he lays on the sofa and watches TV. Does he talk to me? No Does he respond when I ask him a question? No Is it like being married to my 4 year old grandfather? Yes And, even with all this new medication that he is on, he will never improve from what he is now. Oh we may be able to slow the advance of the disease, but never improve on it. And so, I babysit him and work on quilts. This is NOT how I had pictured my retirement. And, on top of all that worry, I have to worry that Trump will take away my health care, or make it so expensive that I simply cannot afford it. (Got that whole pre-existing breast cancer thing going on). And, while my husband knows that for the rest of his life I will be here to care for him and see to all of his needs....I can see that I will not be able to say the same thing. My kids are 800 miles away. I have no support group here to turn to.

Do I sound depressed? Yes I know that I am. I need to see a counselor but I am afraid to use my mental health insurance because I don't want it to register as a pre-existing condition in the future.

Oh well, it is what it is.

 

[Marsha Cassada]

Things have just gone from bad to worse for you. I'm so sorry.

I would not worry about your health care too much. My brother has had 3 open heart surgeries and treatment for a head injury. He has never had insurance. He just pays some money every month to the hospital. He says as long as they are getting some money, they are satisfied.

Can you get into a quilt guild of some kind? I think it helps a lot of be with other women. It's hard meeting people when one is sort of new to an area. I'm afraid I don't have much confidence in counseling. See if your husband's doctor can find a home care individual so you can get away for a few hours a day. There are lots of helpful things available, but you might have to be proactive to find them. Is he old enough for Medicare?

My husband has two rare autoimmune diseases and now has neuropathy in his feet. I'm a little scared I will be caring for an invalid, too, one of these days.

I get hope and strength of perseverance from my faith. God will never ask more of me than He gives me the grace to handle it.

(Dang! I put some water on to boil for pasta, ran in to check my emails, and got sidetracked. the water boiled away! I worry about my own mind sometimes...)

 

[dixie_belle]

Yes, Marsha, thankfully he is old enough for Medicare. So all his tests, doctor appointments, medications are all covered. So that's one less thing I have to worry about. I've got four years yet to go before I'm old enough.

I may or may not have had a slight breakdown the other day. I just got seriously overwhelmed. But, after about an hour sobbing, I picked myself up and started doing my usual chores. It's hard though, really hard.

 

[Miniv]

Oh Lord.....I'm so sorry, Dear Lady......... Cry.....Hit the wall, and/or punch pillows.....You NEED to release your grief and anxiety.

Do you have any family or friends who will come visit and give you some breaks? Are you able and is he interested in taking car rides with you?

Larry and I have become acquainted with a local hay farmer and his wife who are in their late 70's. We buy hay from him and his wife is failing both mentally and physically.

I've started dropping by once a week with either a carton of eggs from our chickens or a baked goodie to just visit with her. Her husband has told Larry that she is always much better afterwards and to please continue. This week, if she's up to it, I'm going to take her for a short drive here in the area to check out the produce stand that's just opened up for the season......She uses a walker, but the produce stand is fairly small....about the size of their living room and dining room combined. The drive is only about 5 miles each way. I've also noticed that, even on her bad days (mentally) she enjoys listening to music.....especially music from her past. I think it helps her focus?

Please post again when you can......We all care!

 

[Ryan Johnson]

Sorry to read that you are going through this. My FIL also has this but in the early stages.

I am also very sorry that you have to be a certain age for Medicare, there is no such thing here, everyone is entitled to it as you should be.

Take care and remember you are never alone. We care

 

[sundancer]

So sorry to hear this. Life sometimes just doesn't seem fair. If you ever need someone to message -even if its just to relieve the stress- please message me. I don't mind at all. Hang in there!

Julie

Victory Pass Stable

Maine

 

[Marsha Cassada]

Yes, Marsha, thankfully he is old enough for Medicare. So all his tests, doctor appointments, medications are all covered. So that's one less thing I have to worry about. I've got four years yet to go before I'm old enough.

I may or may not have had a slight breakdown the other day. I just got seriously overwhelmed. But, after about an hour sobbing, I picked myself up and started doing my usual chores. It's hard though, really hard.

You have not been in the area very long; I find it takes quite a long time to make friends when moving. A small group would be a good way. Garden club maybe? Can you go to a Pampered Chef party or Scentsy--something ordinary and cheerful? Find the Mary Kay lady and schedule a facial? I do hope you can find someone to help you with care giving.

 

[Debby - LB]

It's good to hear from you! yes even under the circumstances. I care as do everyone else here, we all consider you a cherished friend. I am so so sorry, my heart just breaks for you. What you said about no one being there to care for you hit me like a ton of bricks. Shelley if you will please pm me your new address ok? Don't lurk so much, it'll do you good to join in here again.

 

[REO]

Shelley, I can't even put into words how much I feel for you. I think of you very often and wonder how you are. I'm so sorry for how your life is going

I wish there were something I could do to make it better. I hate knowing how unhappy and lonely you are. I know you don't like to talk about things that are going on because you're strong, but please DO keep coming here. You have family here to talk to. I'm still there for you if you want to talk. I care about you more than you know. I also would love to have your address. In case you lost it, my email is [email protected]

{{{{{{{HUGS}}}}}}}

 

[amysue]

Reading about your situation just makes my heart sink. You have been through so much already, I wish there was some way to help you. My grandmother suffers from dementia, it is truly a heartbreaking condition for ALL involved. You are not alone, although sometimes it feels like it, everyone here is happy to listen and help you vent and process things. There are services available for families in your situation, offering counseling, aids and professionals to help both of you out. It took my grandfather a while to find them, but they did offer much relief. Anither option would be social networking, there are lots of good, kind-hearted individuals out there who may be willing to volunteer their time either to keep an eye on him while you get things done or maybe sit and chat with you, sip tea and discuss other topics to get your mind off of it. We had success with fb, for reaching out to others, lots of people from the local community were willing to lend a hand, many were highschool honor students and athletes happy to volunteer for their community service requirements. Sure, they cannot offer medical help, but they provided a much needed break for the care givers. A few of the individuals still visit and chat, even accompany on short outings and provide much needed social interaction and support. You would be amazed at how many people out there can relate to your situation or who just care a lot about reaching out. A support system can be anything/anyone, not just a counselor or topic specific meeting. Please do not be afraid to seek help, if you do not care for yourself, then you cannot care for your husband either. Even though he cannot show it, I know he loves and appreciates you. You are very resourceful and creative, I am sure that you will figure it out. I am glad that you posted here and opened up, I wish I could give you a hug right now.

 

[Debby - LB]

Does your husband require you to be there around the clock? dementia is horrible for everyone and I think the caregiver has the worst of it BUT if you do have some time outside the home now, is there any way you could consider a part-time job OR to volunteer somewhere? Is a school close by? A Library? How about 4H OR a horse club? A farmers market? You can meet new people and join in with a new job or hobby at all these places and the ones Marsha mentioned are wonderful. Don't give up on finding a Church you'll be comfortable in. Your health, both physical AND mental is going to rely on YOU having a life. Look up whether your town has a Website if so there will be all kinds of information on there for you to utilize.