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    • CommentAuthorODAAT
    • CommentTimeJul 20th 2018
     
    I jut happened to be on MyALZ and saw a post that referenced this group. I would agree caring for a spouse is different than caring for a parent. And a spouse with early onset ALZ to me is so much more difficult. I still work and he retired two years ago because he could not recall the codes to his computer. He could deal with his patients (he was a Physical Therapist) but the computer was his nemesis- pass codes and recall on how to navigate the programs did him in.
    So his disease is progressing, he can still bathe and feed himself. However he doesn't want to take his clothes off at night. i cajole him into taking a shower at which point I'm able to wash the only pair of pants he will wear. He cleans up the kitchen after dinner but there are challenges with that. i let him and undo the things that are problematic. But he talks incessantly to himself.It appears he has had some hallucinations, there are times when he yell at people who are not there.He can still read but can't recall the word for particular things. The value of everything is $35.00. Some days he sundowns so I've had to lock the backdoor and hide the key nearby so he won't go outside at night. If he opens the door and cannot recall the alarm code it sets it off and I'm awakened by the alarm company calling. As I sit here in the backyard typing this I'm looking at the back gate which I now lock to make sure he stays put. He walked around the block one day and I really don't know whether he could've found his way home when I went looking for him. But I don't want to find out the hard way.
    We have a married adult son (no children) who does not want to provide any real support. He's of the belief that I can hire someone to come into the home and watch his Dad if I want to take a break away from home for a few days or a week at a time. Aside from the financial impact, I am really uncomfortable with a stranger coming into to my home on an intermittent basis. Other than our son, we have no family in the area, so the responsibility falls on me. I just need a break I know that I cannot be his forever caregiver.
    God bless you all with the strength you need.
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      CommentAuthorCharlotte
    • CommentTimeJul 20th 2018
     
    Welcome ODAAT - that was probably me since I mention it often there to spouses. As you say, it is so different when it is our spouse. Emotionally, physically and financially all come into account but emotionally it is our other half, the one we have dreamed and planned our retirement years with. For many of us we went from our parents home to marriage - I am one of them.

    Has he been diagnosed? Sounds like more than just AD going on, maybe some FTD or Parkinson-like symptoms. Medications can often help if they become a problem or danger.

    Join the crowd of those abandoned by family and/or friends and left to go it alone. Have you considered day care? Where my husband goes it is not just those with dementia (about 60% are) but there are younger and older ones with physical handicaps. The VA pays for 3 days and Aging & Long Term Care pay for the 4th day. The VA pays for a respite person to come in up to 30 days a year, 6 hours per day. I only use them for one day a month to go to an in-person AD support group but most are caring for their parents.

    How old is he? Is he a veteran?

    Glad you found us. We are hear to answer questions, just to chat or vent. It is a safe place to vent.
    • CommentAuthorbqd*
    • CommentTimeJul 20th 2018
     
    Welcome ODAAT,
    I am glad you found this site. You will find it extremely helpful as there are many other members who are or have gone through what you are experiencing.
    It's a great place to vent. We do not judge here. Most of us have experienced the loss of support from family and friends. But now you have found a group of people who will offer support and understanding.
    • CommentAuthorNicky
    • CommentTimeJul 20th 2018
     
    Welcome ODAAT - I joined last year & find the people here the only ones who really get it & don't judge. You'll find lots of info & suggestions from folks who have been on this site for years.
    • CommentAuthorbhv
    • CommentTimeJul 20th 2018
     
    Welcome odaat. I am also on alzconnected - recently. Have been here for several years. Lurked for quite awhile cause folks.were so far ahead of me it was too scary to come very often. Now I am here most days even if I don't post. This.group.feels like real, live, honest to goodness friends. Don't know how I would have gotten through last year, especially, without this group and all the archives of tips.

    You mention your hb having difficulty finding the right word. Reminded me of one day, early on, my hb was telling me I should have gone out in the field with him and our dog because Xena (warrior princess) was chasing, and nearly caught, a battery. It took me a few minutes to get it. She was chasing a rabbit, as in, energizer bunny, hence battery.

    For awhile he would use a.word that rhymed or began with the same letter. Made for some challenging conversations. But now there are basically no nouns. Sometimes my voice is hoarse on the phine cause I may not have spoken for several days.

    A lot of people refer to their spouse as DH or DW. I use hb because for me there is nothing "dear" about this situation. Sorry, couldnt bear to use the word, even in an abbreviation. But if that word is still in your world, more power to you. Charlotte and I might even be a bit jealous.

    You may notice some folks here have an asterisk by their name and, sometimes a date. Their spouse has passed on, or is in stage 8 as they sometimes say over at alzconnected. These folks are special angels who continue to come here to offer tips and encouragement and hope that there might actually be an after.
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      CommentAuthorCharlotte
    • CommentTimeJul 20th 2018
     
    If I am correct, she is from myALZteam not alzconnected. They are two different sites.
    • CommentAuthorbhv
    • CommentTimeJul 20th 2018
     
    Oh sorry about that.
    • CommentAuthorODAAT
    • CommentTimeJul 20th 2018
     
    Thanks everyone for your welcoming me. The site appears to provide some tips and much needed support.
    @Charlotte he was diagnosed by a neurologist but his primary is the one prescribing meds. He recently turned 65. Unfortunately while he retired from the Veterans Administration, he was not a veteran. His stubbornness around seeing a physician eliminated the possibility of obtaining LTC despite my best efforts.You mentioned FTD I'm unfamiliar with that, what is it?
    Again thank you.
    • CommentAuthorODAAT
    • CommentTimeJul 20th 2018
     
    @Charlotte - found the definition for FTD
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      CommentAuthorCharlotte
    • CommentTimeJul 20th 2018
     
    Is he getting Social Security Disability? Hopefully you applied when he lost his job.

    Have you contacted your local Aging and Long Term Care? They will help you find what is out. They are there to support you. Some states call it something different, but if you google 'Aging and Long Term Care' it should tell you where the closest office is.
    • CommentAuthorCarolVT
    • CommentTimeJul 21st 2018
     
    ODATT, you will also find tremendous support and helpful information on the www.ftdsupportforum.com. Do check out that site as well.