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Young spouse here for support and friends

AlzWife2023
AlzWife2023 Member Posts: 362
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edited August 2024 in Social Groups

Hello, my spouse is older. He does not have EO, but we have three children and I am only 51 so I’m looking for people my age to relate to who are caring for spouses with dementia. My DH had signs for at least ten years and who knows, maybe more. I’ve found great support on the spouses’ page but many are retired and not struggling with the personal and financial issues of a woman my age.

Today is day two of me REALLY realizing that our relationship is over. No more fantasies, half truths, or anger. I am his caregiver. We are not partners, friends, lovers or equals anymore. He has not been a parent to our children for a very long time.

Comments

  • Lgb35
    Lgb35 Member Posts: 102
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    hi! I am 54. Our kids are grown in their mid twenties. DH is 61. We both are still working full time. I am trying to get him to quit and go on SSDI but he is afraid if he doesn’t have to think he will decline faster. We seem to have additional challenges while dealing with this at a younger age

  • AlzWife2023
    AlzWife2023 Member Posts: 362
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    hi @Lgb35 do the doctor’s agree that he should continue working? What’s the benefit of SSDI now over continuing to work? Have you spoken with an elder lawyer? I have not …wanted to do everything myself and got Medicaid done & other important stuff but I think I will make an appointment soon b/c things will only get more complicated as time passes and his condition worsens.

  • Lgb35
    Lgb35 Member Posts: 102
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    hi sorry I took so long to reply. The main concern with continuing to work is the liability. DH has not told his employer yet and does a lot of driving for his job. He does not have any benefits through work that we are trying to preserve. The doctors are not as concerned with his driving as I am. He has some areas on testing that are extremely low yet other areas are very high. So the executive function areas of his brain are still high functioning. I have a good job and work from home. I also thankfully carry the health insurance. I think I can manage our bills with my income. Things will definitely be tight and probably one unforeseen event to mess it all up. This is so much to take in.

  • AlzWife2023
    AlzWife2023 Member Posts: 362
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    Yes, it’s a lot to deal with. It sounds like he should take SSDI. It’s a good check & the liability issue is real. He should find another job to keep him busy where he doesn’t have to drive. Didn’t the doctor say something about not driving in the future, if not now?

    I found that I was unable to process all the changes to my life at once and so I froze. All the decisions we have to make now are extremely difficult and involve loss or sacrifice. Making one decision at a time and starting with the facts (not emotions or the if/but stuff) will relieve some of the pressure. Think of the worst case scenario and ask him and yourself if you’re willing to accept that outcome.

  • PabloP
    PabloP Member Posts: 2
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    I can relate to how overwhelmed and alone you feel. I am now the caretaker; I have lost my partner. My wife exhibited symptoms as much as a decade ago but did not receive a diagnosis until summer of 2021. She had to stop working a year later. She is only 59. We have a son who is a college senior. I am the sole parent. He relies on me exclusively. It sounds like your kids are younger so I can imagine that it is extremely demanding and difficult. I manage virtually everything at home. I will need to hire someone to help take care of the house. I am still working and can't manage everything at home, do my job, support our son and be loving and supportive of my wife. She doesn't qualify for any benefits so there's financial pressure too. If you husband is older, then he should qualify for benefits: SSDI? The PACE program? If PACE is available in your area it can be a tremendous support. Of course, it won't help with the feelings of loss and grief. I try not to think back about how our lives were before the disease took its toll — it's too painful. I hope you can find some emotional support.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more