My mother suffered a massive stroke 12 years ago and suffered devastating physical consequences. I lived overseas but travelled home frequently 2-3 times a year for extended stays to help my father look after her. She finally passed away in January 2012 peacefully in her sleep. In 2010 I moved back to the US because my parents' situation was not getting any better. My employer at that time (a global company) agreed to a temporary transfer to allow me to work from our corporate offices and this allowed me to look after my parents. My father fell 2 months after I returned and broke his hip. He since has been able to walk again, has some minor health issues but does suffer from dementia. I do not live with him and arranged for around-the-clock care. I buy the groceries, pay the bills, arrange the staff, take him to doctor's appointments, etc but I don't live in the house because he is constantly called for me day and night and I can get no sleep and I must work. My father was a brilliant lawyer who apparently took care of everyone's business but his own. He had no burial arrangements for himself or my mother (which I've now taken care of), no insurance policy, no long-term healthcare plan. Nothing. My employer has now sent me a letter saying that my temporary contract is ending and I must report back to my place of employment by June 1st or lose my job (I'm in the meantime looking for employment here...good luck to me). What should I do? Stay? Go? Should I/can I force my father in to an assisted living facility even if he absolutely refused to go? Or should I leave him at home and spend every cent of money that he's set aside (which is quickly going) and risk having nothing if he does need to go into assisted living later? He's 89 but his family members have ALL lived extremely long lives (96+ years). I have an alcholic brother who is absolutely not help or support. Any suggestion anyone else who has been in a similar situation would be greatly appreciated.
Your mom could have a different dementia like vascular or frontotemporal dementia. The 2 main dementia tests are Folstein aka MMSE and the MOST - both can pick up subtle differences in cognition that can narrow just what type of dementia when done correctly. If she could have frontotemporal dementia, they can do an Addenbrooke's exam. All This is important as some medications work better for some dementia's and other medications can be a very serious problem for others (this is especially true for Lewy Body). For my mom Aricept was a total waste while Exelon as a patch works. She still has dementia but the rate of decline has slowed. Good luck.
About your mother ... it is possible that she is such a puzzle to the staff because the staff may be familiar with Alzheimers and not other kinds of dementia. There are something like 50 diseases with dementia. Alzheimer's accounts for about 60%, but that means nearly half of all people who have dementia have a different kind!
For example, in Alzheimer's it is common to lose recognition of loved ones; in the disease my husband has, Lewy Body Dementia, that is not typical. Hubby will probably continue to know me and others right to the end. This is just one little example of how different dementias have different symptoms. If the staff is expecting your mom to behave as if she has Alz but she has some other kind of dementia, they will be puzzled indeed.
Is your mother being seen by a dementia specialist?
One minute she's perky and "with it", the next she's in a stupor and can't talk.
they said she's not had a stroke, but can't figure out why she can't talk or even
get two words together.
She's recently had a UTI infection and has been on antibiotics for that, and seemed to be getting better. They were giving her a time line of about 5 days out from finishing the meds to see how she reacted. She also has an ostomy bag, not ili, but the other
She's nothing like she was 6 mos. ago. She still recognizes me, and all her grandchildren came to see her last weekend along with her one great grandson.
It's like she knows what she wants to say, but I see her eyes searching for the word (it breaks my heart!!) She also has an ostomy bag, not ili, but the other.
She's barely able to walk but last week went to get her hair permed at the centers beauty salon. She can't use the phone, as I sat talking with her last week, she picked up the phone and turned it upside down, I said "mom you want to talk to someone?" we can call them, then she layed the phone down "beside" the holder.
Besides having two major surgeries, having this change in my mother and being sick myself and having my cat of 11 yrs die in my arms, I feel so lost and lonely.
my husb doesn't want another cat due to the $$ involved having an animal and as they get older it gets costlier also.
I feel like I could take my last breath, missing my baby cat.
Thanks for listening.
I
Some of the most important things that I learned were that the medicaid spend down transition to a nursing home varies by state. In Utah, there is a 90 waiting period once a person is in a nursing home before medicaid starts paying. Also, the facility prices are all negotiable. One place offered $300 a month off the published $3075 monthly rate for a one bedroom without my asking for any discount. They also discounted the medication management to $7 per day (twice daily) from $15 per day.
Also, because Dad is showing signs of dementia, we chose the place that has memory care (even though it is an older facility) so we don't have to move him again. A key was to let him spend the day at two places. They had activities that he enjoyed and residents who made him feel welcome. They were the ones who convinced Dad that he could be happy there. Also, I let him make as many decisions as possible. He wants to be in control so I give him two choices where I am indifferent to the outcome, e.g. would you like to keep this dresser or that dresser, this sofa or that sofa.
As for my siblings, no one else came through to do the heavy lifting so I just have to do it myself. I am literally camped out at Dad's house right now helping him make decisions about what he will keep. One brother will criticize, sigh. A brother-in-law will question my decisions every step of the way, sigh.
Finally, on your decision re work, if I were in your shoes, I would keep my job. It will allow you to keep helping your Dad. Take care of yourself. If you are stable, you will be able to make better decisions for him.
Regarding her SS checks or other income, if they qualify for NH Medicaid, then all of their income less whatever is their states personal needs allowance (this runs from $ 30 - 80 a month, my mom is in Texas and Texas has it @ $ 60 a mo.) has to be paid to the nursing home. She can opt to still receive the SS check and direct deposit it in her bank account and then she or you pay the NH each month OR she can have her SS check sent to the NH. The NH then deposits the SS check and places her personal needs allowance in a trust for her at the NH.
The NH trust $ is kinda tricky in that she has to spend it so that it never goes above 2K which would disqualify her from Medicaid. At my mom's NH, some of the ladies use their monthly to pay for going to the on-site beauty salon or for shopping needs that they can do at the "canteen" where they have inexpensive things like socks, hair barrettes, etc. You or whomever is her DPOA can go and take $ from her NH trust to buy things for her too. Most NH have a book that you sign in and say what the $ is being used for, like "new clothes" "cosmetics" whatever personal needs items she wants.
I would suggest you speak with the social worker & the care plan team leader for your MIL at the facility where she is now to see just how truly feasible it is for her to come home and whether or not you all have the ability to take care of her needs. Ask about how they are managing her bathing and bathroom needs. For bathings ask how they are doing it - if she is on a 3 person bathing team, then do you have family that will consistently be there to do that for the many months or years she lives with you. Is your bathroom set up for doing it?. If your MIL is a large person, it can be a big problem. My mom is petite and weighs maybe 90 lbs and can still walk on her own but she is on a 2 person bathing team because her dementia is such that 1 person has to distract her while the other bathes her. About the bathroom things, my mom can still go to the bathroom on her own during the day and her toilet is set up with attached to the floor grab bars. But wets or worse in the bed at night, so she is on diaper at bedtime which they check &/or change @ shift change at 3AM. If your MIL is incontinent, who is going to be there to manage this the 4 - 6 times a day? Most family and their living situations are not set up for dealing with someone who needs 24/7 care and don't realize what all will be truly needed to do it. None of this is easy. Good luck and please speak with the social worker @ the NH.
Focus on what's best for the person who needs care, If they have money, certainly spend it on the care in their "best interest" be honest and look out for those who are not honest in the process. One day at a time... baby steps. It's overwhelming for sure, but if you go with your heart things will just be on your path. A good heart goes a further distance than any dollar. Your heart filled with the relief of "you did the best you can" under the circumstances is a great reward. The people on here have alot of experience and great advice serious, steps you need to take, that others that haven't gone through personally don't realize the importance of.
Keep logs of... spending... dr's appointments.... keep copies of everything... get legal papers and id's in order, accounts, incomes, assets etc. for starters... igloo is correct about papers you need, in order, before it's to late.
I'd do my best to keep my job, they're hard to come by and you must take care of yourself too! It's okay to have a life but not ok to give up your life. Take care of your Dad by getting him the best help you can then know you've done your best.
Nursing Homes aren't what they used to be, my Parents would rather live on their own again but it's just not realistic. Mom complains about everything but also says, 3 meals, snacks, laundry, housekeeping, entertainment and around the clock health care, no responsibilities, can't beat it. And it is the safest and most healthy living situation for us all, Dad, Mom and just me.
Let us know how it goes for you and best wishes.
24 hour care is expensive and depending on your fathers health Assisted Living or Residential Care may be an option.
At my mom's NH, there is a "retired" RN who does this for at least 3 of the ladies on my mom's floor. If I wasn't a freelancer and can go in on the odd even though I'm states away, I would have hired her. $ 35 - 65 hr.
If you don't have the following done , you really really need to do these before U go
- Durable Power of Attorney (not just POA)
- Medical Power of Attorney
- Living Will &/or Advance Directives (DNR)
- Declaration of Guardian in Event of Incapacity
- HIPAA Waiver (umbrella/general one)
- Will or a Living Trust
The Declaration of Guardian is one that most don't have - this is really important to be done as it sets who mom/dad wants in her current & cognitive state to be her guardian(s) - once they get a dementia that can change on a whim due to their changing mental abilities. Like if they decide to take back the DPOA.
I'm a firm believer in having an elder care attorney take care of all this. It will not be expensive as most is done by the paralegals. You do want to go in prepared with the information for the documents (e.g. the residence located at 123 ABC street, aka parcel #5678; Ann Smith, wife of John Smith, with the info on all the births, deaths & prior marriages) as well as valid ID for the elder. If the decisions have been already made, this should all simple, straightforward paperwork. Should take 1 - 2 hrs for intake & then 1 hr a couple of days later for the signatures to be done.
If mom/dad has assets, then all this should be paid from their assets. This also is important if you or other family ever get challenged on who is DPOA or end of life issues. If you pay for all, and you benefit, then other family could go to court to find it a coerced document.
Many facilities will require the legal & DNR done in order to accept a resident.
As far as AL, try to look for a facility that is "tiered" - by that I mean one that has admissions from AL to NH and also does hospice. You don't want to have to move your dad, say 7 months from now, and have to find a place all over again....
I am DPOA for my mom and I forced her to move from her home into IL - as DPOA I could do this. She could not function at home alone, we had done the home health agency route too (she would lock the door, tell them to leave early, etc so they couldn't work as she didn't need them). I got her to have meal delivery and she went to a senior center X2 week with a van pickup.It seemed to be OK but looking back a lot of this was a show she would do for us when we or others would visit. The last straw was coming to visit unexpected and literally getting thrown back by gas fumes when we opened the kitchen door. Gas had been running for hours, there she was in her room watching TV. Oblivious. It was the stove's fault too. Then when my son went to open the other back door to get the gas fumes out, couldn't as the roof had an awning beam down and it was stuck AND the key was broken in the door. Again not her fault as a burglar did it. Put her on a couple of IL lists that afternoon and moved her in a couple of months later. She was major PO'd but it needed to be done. She did IL for a couple of years and then NH a yr ago. Not easy but you really need to go with your gut on what's best for both you and dad for the long, possibly super long, term. Good luck.
I feel for you, I know there must be deeper issues here. I have a daughter and son in law who are corporate lawyers in Boston. Lawyers should know what they need to do better than anyone. Of course, his expertise may be in many other types of law. But surely he had some idea about elder care and the problems of not planning. He made the choice not to do anything.
My mother is doing something sort of the same. I have tried to stop it before the time comes and the train wreck happens. She refuses to listen. So I will do what is best for me and just make sure she is taken care of.
Our parents expect us to take care of ourselves when we grow up but they need to take care of their business so their elder years are not a nightmare for their children. I hope it works out for you.