A life sentence
I feel so god-forsaken. My DH is in stage 6 (I think) and his constant combativeness and total confusion ruin every single waking day. Truth is I don't even like him anymore and we've been married for 50 years. When he was diagnosed the neurologist said "this isn't a death sentence" and I remember thinking "no, it is a life sentence - my life." I have him on a waiting list for MC but that will just mean I start burning through our hard earned retirement savings at a rate of $9000 per month until we are both impoverished and I have to sell my beloved house because I can't support myself in it on spousal Medicaid allotment of $150,000 in assets.
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I get how you feel, my partner is also stage 6 and in MC. I'm just marking time. I'm glad you have him on the list, hopefully it will improve your quality of life a little bit at least. And like the rest of us, you can hope that he gets spared all of the ravages....pray that something else intervenes. Stupid thing for the neurologist to say. It is a death sentence. Makes me ashamed of my own profession.
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Please see a certified elder lawyer CELA www.nelf.org if you haven't already, to protect any assets properly, for your own sake. I am in the same boat. But we have no hard earned anything that hasn't already been sacrificed to dementia. I keep trying to work part time, remote, etc. just to keep our heads above water.
The other immediate next step, I'd say, is meds. For him first, lol. If he won't take them, it is reasonable to crush and stir them into juice, water, pudding, applesauce, soup, etc. For us, Seroquel, Sertraline, and occasionally 10 mg of Melatonin helped until UTI antibiotics could be prescribed and started working. Those were the periods with the most combative, aggressive behaviors but on a "normal" day in mid-stages it was the wandering, squandering, weaponing up, and trying to drive etc that sent me looking for medication intervention.
Give him whatever it takes to calm the raging and stop the insanity for you both. He can't be feeling too good without this intervention either honestly - we learn here that with PWDs behavior is communication, so please see what can be done immediately to tone down his behaviors.
I agree your assessment of the diagnosis is right. It is both a life-and-death sentence, for us and our LOs. Not pretty. And very hard to swallow.
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Think he said “ isn’t a death sentence “
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I was advised , this is nj, that if comes to needing Medicade you change deed to one not needing Medicade. It’s all legal. And can really only have certain amt of money and can by law spend part on anything you need to bring down. Car , roof etc
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Please talk to an elder care attorney and ask about what you can do to shelter your retirement money and your home. You would be surprised at what can be done. It may not save it all but a large chunk. It depends on the State as to how they can set things up.
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Just had to chime in here because I feel you re: neurologist's comment. We had to change neurologists because we moved and the new one commented to me (at our first appointment), "I see you are concerned about DH, but you'd never want him to go to a nursing home. Those places are terrible. My mother was just diagnosed and our whole family has made up our minds she's never going." It made me feel so judged, even though I didn't tell him anything about what I might do in the future. They get a 15 minute (or more if we're lucky) snapshot, while we live the reality 24/7/365. And so wrong...it is a fatal illness, just harder to predict than many other such illnesses and with pain that can't be located but which can threaten the hearts and souls of both caregiver and patient.
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Talk to a CELA who is knowledgable about Medicaid and Medicare in your state. In my state they have changed the rules so they look only at income and not assets and there is a credit against income for board and care. I think its more complex than that but the situation is not as dire as it used to be.
The best advice I got was a get a good CELA and if apropriate a medicaid financial planner/advisor. In both cases you should be able to get at least a phone call for free . If you don't know how to find a good CELA, call your local Alzheimer' Association and ask for a few that they really know
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I think we all feel the same way- as if we’ve collectively fallen through the cracks of some system that works for others. Our loved ones ended up with an illness that damages not only them but spouses, families, bank accounts and futures. In addition to our grief at losing our LO- we somehow have to climb mountains to find doctors who understand and can help- and deal with friends and family who don’t get our reality. This all sounds so discouraging-but there are days and flashes of humor, moments of joy amidst the sadness and for that I’m grateful. It’s scary to know the road gets steeper before it ends and we have no idea how long our journey will be, but I’m so grateful for all of you here who let us see you out in front with loved ones in stages 6-7-8 - even though there are such hard and sad things to deal with you give us all hope that we too can continue and complete the journey…
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Thank you for your understanding though I am sorry you feel it, too.
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I’m in California. I was told by the attorney to qualify for Medicaid to save some of our assets, everything had to be done 5 years prior to requesting help of any kind?
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What state are you from? I just met with an elder care lawyer and she shared that if my DH needed nursing home care that I would be able to keep my house, car, and 125,000 dollars for him to qualify for medicade. It is frusterating since I am much younger than my husband and I have a teenager and preteen.
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I am in MN. And similarly, I can keep house (up to $671K in equity), car and $156,000 of assets for my husband to qualify for Medicaid. Husband can have $3000 in assets.
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My husband can have 2500. I just worry that as I get older I will have no money to care for myself. I know that sounds selfish.
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The Federal government provides funds to each state for their Medicaid program, but each state determines their own rules for how funds are disbursed. It is worthwhile to meet with a CELA to find out exactly how your state's rules work. The CELA will review your assets and explain which assets are non-exempt and have to be spent down before Medicaid will kick in and begin to pay, and which assets are exempt and the community spouse (you) get to keep. In my state the community spouse is allowed to keep their own income (ie their Social Security and any pensions they have earned), a primary residence worth up to $650K, one car, and up to $165,000 in investment assets. My state also allows the community spouse to keep their individual retirement accounts, so while DH's IRA and Roth IRA are non-exempt and would have to be spent down before Medicaid kicks in, my IRA and Roth IRA are exempt and I get to keep those funds. This IRA status varies from state-to-state, but if you're in a state where you as community spouse get to keep your IRAs, it can make a big difference to your plan and to your peace of mind.
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I am in Maryland. The attorney said that they would not take the house as long as I am living in it. Also, she said that a one-time annuity can be purchased using our retirement funds just prior to the long-term care insurance running out. Because you have to take the money out of the 401K to purchase the annuity, you do lose a lot because you have to pay taxes on the withdrawn amount all at one time. I really don't fully understand it, but it is better than losing everything. Who would have ever thought that we all would be in this situation in our so called "Golden Years."
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Doesn't sound selfish at all! Sounds pragmatic!
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I have attached some links. I have no expertise in this so I would speak to someone knowledgable in Medi-Cal financial planning before doing anything. There are still income limits.
Let me reiterate that I don't know what all this means. You really need an expert to help who is specifically knowledgeable with these changes and deductions and exemptions to the income side and the other programs. I don't know if there is a free ombudsman or advisor?
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Thank you. That was kind of you.
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What state are you in? Thank you for the advice.
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Maryland.
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I am from Minnesota. I know the asset limits vary from state to state. None is enough, sadly.
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Same in NY. We met with the attorney today. He explained there is a 5 year look back for Medicare/medicaid re placing liens on property. I don’t know if this is common to other states.
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Exactly what I was told in California.
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Thank you.
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I truly appreciate your feelings about your home. I had to make the choice of either selling our home or keeping my husband (Stage 6.75) in our home to save it. The local cost for Dementia care starts at $12,000. a month. Not possible on a retired military income, so it was the house or taking care of him myself with the help of Hospice. This Hospice company emphasizes the use of medication to make life livable for YOU. My husband's behavior issue has been agitation at night. It involves waving his arms, endless talking and trying to get up every five minutes. I was losing my mind until my husband's retired military male nurse took charge with medication, lessoning the nighttime problem by 95%. He is on Seroquel, Haldol and Trazadone. He now remains at peace most of the night. The other upside is that the next morning he sleeps like a rock until about noon, giving me the opportunity to do housework, book work, relax, etc. He wakes up refreshed and at least temporarily a bit "saner". I recently posted a very scary episode with my DH, and the people here helped me tremendously. We are all in this boat together, and the great news is that we have a collective strength to help each other through this chapter of our lives. Blessings to you.
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i had a hard time accepting that I needed to be grinding up meds and putting in DH foods. Since I have, things are still rough, but much more manageable
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Thank you for your insight and kindness.
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> @Buggytoo said:
> Doesn't sound selfish at all! Sounds pragmatic!
I couldn't agree more. Both partners deserve thoughtful means of care.1
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
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