High grade late stage care.

Crushed

DW  can walk, chew and swallow.   That is the absolute total of her abilities.  She has not recognized a cookie on a plate for 2 years.  She has not recognized me in in the same time.  She gets really first class care. When I checked her the other day she was is prefect physical shape.  Fingernails and hair growing and trimmed. Eyes bright and clear. not a skin mark anywhere.  She enjoys the desserts I bring in.  She is pleasant and appears happy.  But she is not the girl I married in any way shape or form. The body I see is the shell of that person. It lacks the brain that made her who she was. I refuse to pretend that she is still there.   She is my responsibility, not my partner.  I am often overwhelmed by the sense of loss. 

She is in a good facility and I pay extra for a lovely personal caretaker I just did our taxes for 2020 so I know what it costs to get her this level of care and I know how rare it is to be able to pay for it.  I was her sole caretaker for almost 6 years. 

DW worked incredibly hard all her life,  Doctor of Medicine at 25,  brilliant pioneer in medical computing , retired on disability at 60. A shooting star .  She will be 69 in May.  

The loneliness is painful beyond measure.  I see her on Face book most days.  It hurts more than it helps.  She gets better care than I could give her.

nancyj194

Crushed, you DW is fortunate to have such wonderful care.  I agree, it comes at a price. 

Smile because you have the financial ability to provide her with the best care available. She sounded like an amazing woman before Alzheimer's stole that away from her.  

When she retired at 60, was it because of  the dementia or another health problem? My DH also retired at 60, because he could did not have the ability to do CAD. He was an engineer. 

I thought it was because he lacked the computer skills, but started seeing other issues that suggested something else was going on.  Our children thought it was because of his age, but somehow we just know it's well more than that.  

Anyway, like your DW, my husband, who is now 81, and had more wrong with him through his 50s and 60s, is in perfect  health. He had a heart attack in 1999, lung biopsies, knee surgery, shoulder replacement, bowel resection, etc. I spent more time in hospitals than my own home. 

His latest bloodwork came back perfect. In the meantime, both of my knees now have issues and I'm scheduled for a new left knee April 2. I can barely walk and will get the other knee done when the surgeon gives me the okay. I've been physically active all of my life, never dreaming my knees would give out. I was the one who always had perfect blood work and great health. The last four years, I rarely sleep. The rheumatologist said I must get more sleep!  I do everything right with sleep hygiene, diet, and no alcohol. I'm just waiting for the stress to lessen and sleep to come back.  

Like you, the loneliness can take its toll.  We've had both of our covid shots, which was uplifting in itself. I miss going out to dinner, though DH would not say a word to me, but stare at everyone in the restaurant and not respond to me if I said anything.  It was uplifting when the waiter would stop by and said a few words to us.  

Loneliness is painful.

Crushed

DW retired on federal disability with dementia. On her last day of actual work she was 59.    I kept her on the payroll on leave as long as possible to improve her pension.   (She got a major promotion and large pay raise just before getting diagnosed with MCI) She had a ton of sick and annual leave. She could carry over extra leave since she was a "vital employee".

Potsie

Dear Crushed,

I am struggling with the horrible loneliness, too. My DH is 66, I am 64. We should be enjoying each other now that all the kids are grown. We have been robbed of many years already. I miss the conversations, trips, romance, walks and everything we did together. I visit him everyday. I try to hold his hand but lately he moves my hand away. He is nonverbal so I do the talking and there is only a smile. I love him dearly but feel like I need more. It is so, so hard.

Caring4two

Crushed wrote: 

…But she is not the girl I married in any way shape or form. The body I see is the shell of that person. It lacks the brain that made her who she was. I refuse to pretend that she is still there. She is my responsibility, not my partner.  I am often overwhelmed by the sense of loss…

Crushed, I think you and I joined this group about the same time. I have followed your journey past and present. I come back here once in a while to see how you are doing. My husband was also a federal employee, engineer for the Army Corps of Engineers for 35 years. He was in charge of troop support in Africa and the Middle East during the height of Desert Storm and Desert Shield. Made it all the way to a GS 16. He was diagnosed in 2013 and dead by 2017 at the age of 72. I became a widow at 65.

Some would say I’m lucky that he didn’t “go on for years” with this disease. Looking back, it was such a whirlwind of constant change, I could barely keep up. I’m a retired ICU/CCU nurse so certainly knew the patient care aspect. What I wasn’t prepared for was how to deal with my emotions of loosing my husband of 40 years and becoming a widow (a word I HATE). Yes, legally I’m a widow, head of household says the IRS,  but in my mind I’ll always be a wife and mother. 

Most of our married life he was traveling to some far off place for work TDY. Places I’d never heard of before. He contracted malaria in Egypt and hepatitis in Sudan. I did get to go with him once to Riyadh, Saudi Arabia for 2 years. 

While I cared for him at home for those four years, I was (the last 6 months of his life) looking seriously at memory care placement. He was more than I could handle. I wasn’t getting any sleep and consequently damaged my health significantly (heart failure). Now I’m on disability due to the stress and toll caretaking did to my body. At the time, like so many, I was very concerned about the money involved in placement. I’m am proud of you for providing the level of love and care you have for your wife, at home and in the care facility. You have done and excellent job.

 Many a night, while sitting at his bedside, trying to keep him in bed, ready to SCREAM, I would think to myself, how would I want to be treated if it were me laying in that bed? How would he treat me? What would he think about wiping my butt and and changing my diapers? Would he still love me or resent me? Yes, the man I knew was a stranger at this point, but I wanted to honor him as my husband and the father of my children. No, he wasn’t a marital partner anymore, and yes, he was a shell of his former self, but he was also a very sick man with a brain disease that has no cure. The loneliness was and still is ever present in my life.

I didn’t mean to go on so long and do not mean to offend in anyway. I just wanted you to know, I care about you. You are doing a wonderful job. You write so passionately about your personal journey with Alzheimer’s. I read somewhere that “the reverse side of love is unbearable loss”. My life, as I knew it, is over. I am now alone. Is there happiness after this damned disease? I don’t know yet. I just get up everyday and try to honor his memory. I wish you peace crushed.