I've been away for a while and need to talk

jennkatx

Since I was last on this site, we moved to a smaller townhouse 1 1/2 away from that awful town. He did ok with the move. I'll just skip to now. he had 2 seizures a month ago in which the hospital labeled as "fainting" yet put him on antiseizure meds. he is going to get an ultrasound on his carotid artery, then and EEG. he can do the basic things like take care of himself, fix food, however he is only eating 2 small meals a day and has lost 20 lbs. was told to get the protein drinks, he hates those. I have asked the doctors about this only to be told this is usual when they are in decline. what does that even mean? Does he have weeks, months, a year. He also looks frail, like a wind could blow him away. I feel like I don't have a voice, I said over and over he had 2 seizures, I saw it with my own eyes and never hope to see it again. He is finding it harder to go up and down a small set of stairs. Not wobbly just old. we do have home nursing come in for his vitals and fill his pill bottle. Also, for PT. We are going to start getting a team from the VA to come to the house. he does have a living will and when he was younger, before this happened, I said I would fight it because I didn't want him to die. now when it happens, I have to let him go. its hurts. Time to get tissues

I am going to work on funeral plans incase his life insurance is not enough. I like to be prepared. He is going to the township where his family has lived for over 200 years and buried in the cemetery where his family is. its 1 1/hour away I just can't do it yet.

I sometimes feel like I'm in a black hole screaming but there's no one there. and literally there is no one, just me. no family, no friends, and it has been this way for a long time, you think I would be used to it by now.

Maru

https://alzconnected.org/discussion/73699/ive-been-away-for-a-while-and-need-to-talk

I amreally sorry that you find yourself in this dark place. Sending love, hugs and prayers.

marier

I am sending you hugs and prayers. The VA has been so helpful to me and I am hopeful you find the support you need with the VA. I also have Hospices on board too. Take care and come back to vent often. It helps.

jennkatx

my husband is very laid back and not really getting angry, which from what I hear is a blessing. He also doesn't wander. it just seems like he's just fading away.

jennkatx

no offense but the VA has not been helpful at all, until I get into the home something program. I have no voice. no one there wants to listen to me.

terei

If he is steadily losing weight, I would call hospice + have him assessed. They will give you more help that you need.

JeriLynn66

Hospice can help. You don’t have to have a Doctor’s order. Just call a couple of local companies and ask for an evaluation.

SDianeL

https://alzconnected.org/discussion/comment/249857#Comment_249857

every VA patient has a Social Worker. Have you contacted his? You can also ask to speak to the Patient Advocate. The VA was very helpful with my husband. However the VA doctors were no help because there was nothing they could do. I don’t think they have any answers. There is so much about the brain they don’t know. I have gotten more help on this forum than any doctor. I would ask the VA for a hospice referral. Hospice offers so much support in addition to caring for your DH. Seizures are common in dementia. My husband had episodes of extreme high blood pressure, high blood sugar, episodes of sweating, dizziness, nausea. There never found anything wrong. Someone on this forum posted that when the disease reaches a certain part of the brain it can affect those things. The Neurologist said it was consistent with Posterior Cortical Atrophy. Keep us posted. Hugs. 💜

Biggles

What a frustrating sad state of affairs. From my experience I think you are right nobody else really cares. Family and friends just don’t understand and shy away perhaps with good meaning and intent but you are really left alone. It saps all our strength because we care so much and feel so helpless. We are our DH’s lifeline, carers, protectors and friend. All the medical stuff sounds as if it’s being done and maybe nothing much else can be done but a little kindness, support and understanding would be nice. It’s such a difficult journey for you but we do understand. Vent here it helps.

Biggles