Hugs to you. I completely relate. The guilt! I hate it and wish I could just move past it.
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If we spend all funds in2 years for dad, there will be little left for mom after he passes. This also worries me too. Mom worries about it constantly. She often defies logic about lots of things in my opinion but her brain is an exact abacus!
The $ piece is so difficult! Would be much easier if we all had crystal balls.
FWIW, my mom lived 10 years after her initially ALZ dx. When we finally placed my mom in a facility, we made sure it was Medicaid certified. We didnāt come close to running out of funds but we didnāt know that at the time.
My understanding is that the surviving spouse can keep the primary home, a car, and can have up to $137K in savings protected even with Medicaid.
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Weāre in Illinois, not far from your town. I thought Medicaid only allows less than $12k in assets, along with the house and car?
@cag60093 I think the hospices around here would have accepted your Dad, since he is indeed declining. And hospice often uses ādementiaā as the hospice diagnosis for hospice Medicare when there is a complex picture without one specific, clear reason for hospice.
One hospice here also offers palliative care, which does not require the 6 month life expectancy, and one hospice here offers ābridge to Hospice,ā which facilitates transfer to actual hospice.
Are there any hospice organizations near you, besides the one you talked to?
My mother was on hospice three times. You certainly do not need to be on your deathbed and the services (aide, nurse, social worker, chaplain, volunteer) sometimes help people āgraduate.ā
Stick to your guns about the timing of the balance issues.
Fyi you cannot have PT or OT once on hospice, Hospice Medicare wonāt pay. You can pay privately of course. Since your dad needs PT, you might want to look into a home health nurse first (MD can order) and if he cannot progress, then turn to palliative or hospice.
We have a state form called a MOLST. Hospice helped me fill it out with maximum limits, meaning no artificial hydration or nutrition, no transport to hospital, as well as DNR. Are you ready for that?
Finally, I have been in a few support groups over the years and some are so relieved when they place their parent or spouse, and the resident/patient is sometimes happier too. Not always. You can spend the same amount of time with him but drive awa, as can your mom.
I have been so impressed with facilities that do memory care only, as opposed to memory care units that are part of assisted livings. There is always the danger, though, that a facility will ask that your dad go to a skilled nursing facility. For that reason, if I had it to do over again, I would choose a CCRC with all levels of care, independent, assisted, memory and nursing home.
My mother also had vascular dementia and her balance was off. We tried various exercises for vertigo and realized it was her brain. She would try to sit and weave around. A wheelchair with high back helped.
I really think it sounds like your father would qualify for hospice here. Maybe you can have PT for him and then investigate other hospice organizations. Clearly he IS declining.
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Thatās not what we were told when my mom was ill but it was before we lived in IL. Medicaid Protections for the Healthy Spouse
Man, are we in the throes of this now. FIL who was formally diagnosed with mid-stage Alzheimerās a little over three years ago has deteriorated very quickly. In-laws are simple folks retired on a couple of pensions. It has been an education about the system as well as the limits of human endurance. My MIL has aged dramatically. I think we all have.
No. Self-preservation isnāt selfishness. You have two sisters, and neither of them is going to do anything, right? So itās all on you.
Are you retired? Do you live very close to your parents?
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If dad needs the care, and spending down assets, he can go into skilled care (nursing home) with mom being able to keep the house and some assets. Do need to look into this option. Also easier to get into a better facility if you look when you have the assets and a bed opens up - then they transition to Medicare/Medicaid. It helps to talk to a lot of people about options and facilities; maybe will not need, but if you doā¦
FIL was in skilled care for a few years. MIL needed to go to skilled care and drew it out until she absolutely needed to go and she died a few weeks later (she had a slew of medical conditions, and her hypertensive heart disease did her in a day before she turned 92). The first week MIL had she was doing well. But once the heart disease kicked up (and medications were no longer effective enough) she had a few days of no eating/drinking, and passed during the night.
I forget how to quote, but that neurologist is completely wrong. Once a dementia patient loses interest in food they are days to a few weeks away from dying. To be in hospice, you donāt have to be that close to death!! My fatherās been in the program for 18 months! And itās a godsend. A nurse checks on him once a week, all his meds are refilled, pillboxes filled, i get emotional support, and if thereās a health crisis they send a nurse to do house calls so you donāt go to the ER. All that support is needed long before they stop eating. Please just call hospice directly to get information at least.
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I did hospice volunteer training at one time and they said the biggest conception out there is that hospice is for the last days before death, and that as a result, so many miss out on the months (or even years) of services provided.
(One note: my mother stopped eating 4 months before dying (lost 40 lbs.), but with hospice on board, started eating again in her last 6 weeks. You never know!)
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Another thing - if you go home straight from the hospital, any PT etc will be out of pocket. But at rehab hospital, PT and OT will be helpful, and if he needs ST. At our facility, there is an initial OT/PT/ST evaluation at the get go. Then they follow a plan on the therapies needed.
We had PT and OT covered by insurance(Medicare plus Medex) at home, after hospital and in some cases after leaving rehab a little early.
Yes, I have 2 siblings and their help to date has been minimal. One bc sheās out of town and covid years just made things impossible to help. The other lives 1.3 miles from parents but isnāt reliable and her help is when it suits her schedule. I live 20 minutes away and I am not currently working.
Since my dadās decline started Feb 2020, as covid hit, I became the constant and daily help to parents. I also speak my parents native language the most, so everything always falls on me to take care of and FIX and I mean everything.
I have reached a point where decisions for dad and mom are now even more critical. I am often paralyzed by the pros and cons and I donāt want to avoid making mistakes so parents face less trauma and disruption.
I have been understanding that sisters canāt help as much as me for numerous reasons. One esp wants a thorough research on all options but I am expected to do them. I canāt do it all and resent that I am expected. Waiting for her to do her part in the past meant nothing happens bc she doesnāt follow through or is too slow to follow through.
Fyi I have found Facebook groups like āCaregivers of Elderly Parentsā, and other, to be tremendously helpful. Your post sounds like many in that group! You may be initially put off by the anger and angst (I was) but there are many positive, helpful posts too. And, after a short time, I found myself identifying with the angry, angsty posts as well.
I was my momās health care power of attorney and was expected to make all the decisions too. My brother lives across the country and was good emotional support but there was always that underlying questioning which was so draining. Even when my mom had her last brain bleed, I had both my dad and brother, plus aunts, fighting me about doing hospice vs surgery! Thankfully the neurologist told everyone that surgery at this point in my momās life was not recommended and that she would likely die a more painful death, but the outcome would be the same. It was so hard having to make all those decisions and be second guessed.
My $.02 would be to be direct with your siblings. That if you are going to rely on you, then you make the decisions without judgment. If they want to step up, then you are happy to turn over the reins.
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I had to make a decision when my brother had his final brain bleed. Why? Because he had no family other than my 2 surviving brothers & me, and I happened to be the one at the hospital with him when it happened. I had both brothers on the phone, and each had his own opinion. My niece was with one brother, and she was putting in her two cents. It was absolutely the worst, most gut wrenching experience of my life. In the end, I was able to get them to understand the severity of his situation, and they agreed that no extraordinary steps should be taken. It would have been difficult if they hadnāt agreed, but I would have made the decision I made, no matter what. Itās incredibly hard to be the one who is there, the one seeing the reality of the situation.
Having other family members can be a blessing and a curse. Herding cats to get everyone on the same page can be the worst, but it was such a solitary feeling making life-and-death decisions on my own for my dad. So many times it just felt easier to take care of it myself since I was always the person on the ground.
Best to threadmates dealing with this now! My sympathy and empathy. Lots of hugs!
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PT and OT after hospital - not in our state for almost all Medicare type coverage (if Medicare doesnāt pay, supplement doesnāt). Some Advantage plans may have something and it may be something special also within certain states.
We are spending a few days with Hās mom, who lives 11+ hours away. His sister has recently begun spending every day with her at her assisted living facility. MIL would be okay without SIL being there so much, but it makes SIL feel more comfortable, so thatās fine. The problem is ā¦ she talks about how draining it is, but she still insists on being here even when we are. H told her that she can stay home & relax for a few days while weāre here. We come over at 9 & stay until 8, so we are very present. His mom isnāt bedridden, in a wheelchair, unaware of who she is. H can handle anything that might go on. His S decided not to come today so she could make some preparations for having Thanksgiving at her house. But she texted him around noon to ask is she should come. Ummmmm, why?! If youāre the sibling who lives near the parent & does most of the day to day care, please accept that the out of town sibling can handle things ā¦ and enjoy a bit of respite.
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