Looking for real talk from those that have cared for a terminally ill parent

[pearlsngems]

If your MIL still prefers to remain at home, there is another option than her current arrangement. Hiring an agency that provides live-in caregivers worked for us. They ensured there was never a gap in coverage. We utilized Home Instead Senior Care.

It may cost more than your MIL's current arrangement, however.

 

[YadaYadaYada]

@pearlsngems, I just found out they will not let her go to hospice because per her nurse "she isn't there yet" also if they send her to hospice now and she lives longer than expected she may exhaust all of her benefits under Medicaid. MIL doesn't have any money to hire a private care agency and honestly with two small children, neither do we.

Now I am at a loss, DH feels like he needs to fill in all the gaps whenever someone can't be there but he also has another household to worry about. He is a type 2 diabetic on medication for high blood pressure, I worry about him overextending himself and fear it will only get worse as people drop out and he feels he has to commit more of his time. I told him I would look into finding out if there are any organizations that can help.

 

[pearlsngems]

This is a significant problem in our country. Baby Boomers (like my husband and me) are aging, and there will be more and more people needing late life / end of life/ dementia care. Their adult children usually cannot afford to leave their jobs to take care of their senior parents.

If my mother hadn't been able to afford her residence and caregivers, we would have had to put her up in our tiny dining room, or move our then-14 year old daughter to the basement! A two bedroom house doesn't leave many options.

The prospect of my daughter having to care for my husband or me in old age is actively limiting my willingness to spend money on luxuries like jewelry any more. Having written checks for my mother's care in excess of $10K/month, I realize I ought to squirrel more away for my own late life care.

Are you aware of agingcare.com? If not I recommend it. I found it a very informative site for caregivers, and there is a forum.

 

[YadaYadaYada]

@pearlsngems, we were in the same boat, if she had moved here we would have had to combine our bedroom and living room so she could use our current living room. I will look into agingcare.com, thank you for the suggestion. I'm currently looking into The American Cancer Society and United Way to see if they can provide any assistance for her. She did give us a few thousand dollars (to hold on to for safe keeping) but that along with a very limited life insurance policy and the money she has in a bank account will probably just about cover her funeral costs, so I don't consider that money we can spend now.

 

[pearlsngems]

I just want to add that I understand hospitals are prohibited from sending a person back to an unsafe living situation. If your mother has a fall and goes to the ER, and if you tell the hospital that she does not have a safe living situation at home, they cannot send her home. It would fall to the hospital's social worker to find a safe situation for her, which might be a nursing home. This is what I have read on agingcare forum, when people have posted questions about what to do with a senior who is not safe at home but lacks better options. Might be worth looking into, especially as your MIL has been falling.

 

[marymm]

If you haven't already, OP, this is an excellent resource to find out the services/assistance available in your MIL's geographic location:
https://www.payingforseniorcare.com/longtermcare/find_aging_agencies_adrc_aaa.html

 

[Rfisher]

Also ask the organization that said your MIL is not ready for hospice, if she is eligible for palliative care.
I second the suggestion to reach out to the discharging hospital's social worker. Most likely when that person popped into her room to inquire- they were told that family was taking care of her, so they closed the case.

 

[House Cat]

If your MIL had no family, what would they do with her? There has to be some kind of program to help her. They just don’t want to extend the benefits if they don’t have to.

It has been my experience that difficult people (MIL) create difficult circumstances for themselves and then they expect the whole world to come and pick up the pieces for them. This pattern can perpetuate itself until the very end. It doesn’t have to be this way.

 

[pearlsngems]

I agree that people often make things more difficult than they have to be, but this situation can happen to someone who isn't difficult, too. All it takes is being old, sick, and not rich.

The problem with your MIL already being at home is that she is no longer the concern of the hospital's social worker, whose job is to deal with those currently at the hospital. It is not the hospital SW's job to find living situations for people who are out in the community.

If your MIL has a fall today, call an ambulance and have her taken to the ER. Once she is there, refuse to allow her to be sent home-- because it is unsafe and she has no one to care for her (if that is the case, if her caregivers have actually left.) The social worker will have to find a placement for her.

 

[YadaYadaYada]

@pearlsngems, @House Cat, @Rfisher and @marymm, thank you so much for your posts. I wanted to pop in really quick since I just spoke to DH.

The biggest development is that a schedule has been created so that there will be someone with her 24/7, up to this point there were not enough people, this includes at least one more health professional so that is a plus. DH is not on the schedule but he has been visiting her everyday for several hours, her landlord caregiver is rather insistent that he needs to be filling in any empty spots that come up. I'm telling him to just keep visiting and ignore her, why so much emphasis on him being on the schedule especially because he can't lift her either with a bad shoulder.

I'm going to keep looking into the links you guys have shared as well as looking into any other resources I can find that may help. Thank you all so much.

 

[Calliecake]

@StephanieLynn , I’m sorry things aren’t going smoothly. Don’t be surprised if your MIL fights to stay in her home, even after what happened today. She probably isn’t going to agree to go anywhere she can not smoke. Inpatient hospice would be the best situation but from what you have said, I doubt your MIL will agree.

Please don’t read any further if you don’t want an opinion. I will ask for my post to be deleted if you want me to. I’m going to be brutally honest with what I experienced.

Your SIL is going to say she will do things she will never do. The alcoholic will continue to drink while probably ignoring the needs of your MIL. It’s unrealistic to expect the 72 yr old to be able to pick her up. From things you have written the past few days there are so many ways this situation can get worse.

Your family has to come up with a realistic plan while respecting your MIL’s wishes. Unfortunately most of the work will probably fall on one dependable person. The people who do the least will complain the most. This has been my experience. I hope things are different for you and you can get her to agree that Hospice will be best for her,

If she is not in pain now she may change her mind regarding Hospice when she is in pain.

I know how hard this is and am hoping things get easier for you. I’m sorry @Strphanielynn.

 

[YadaYadaYada]

No worries @Calliecake you really hit the nail on the head, I pointed all this out to DH last night when we thought hospice was an option. SIL is only 26 years old so she has all the answers she thinks and I know she meant well by taking all this on but she is in over her head. There really is no good answer or solution. I can't be down there much because I have to be here with the kids and pets (virtual zoo). DH can't stay nights because we have one car (and he has a company truck but can't really use it for personal use) so when they were looking for someone to stay nights from 10-6am there was just no way that would work. Logistically there are a lot of things to consider.

I just hope things go well, that's all we can really do at this point.

 

[pearlsngems]

At the end of the day, your MIL is her own responsibility and has the right to make her own decisions, if she is competent.
Hopefully a family member has a healthcare proxy document, and power of attorney, if/when she stops being able to make her own decisions.

 

[Calliecake]

@StephanieLynn , In your SIL’s defense, this has to be an excruciating emotional time for her. She doesn’t want to lose her mom and she may not be to the point where she has accepted this is happening. It is hard to lose a parent at any age. She is in over her head. I hope your MIL agrees to an inpatient Hospice. It will make things much easier on her family. Please try to be supportive of each other. None of this is easy on anyone.

If you are feeling frustrated and angry, come here and vent. It’s a much better alternative than saying something hurtful to a family member that can’t be taken back. Hugs

 

[YadaYadaYada]

@Calliecake, you are so right about SIL, she is going through a lot. My response above probably came off as cold and judgemental, o would NEVER criticize her IRL and in fact I do think she is doing a great job. It is a tough time for everyone for sure.

@pearlsngems I really appreciate all of your posts and suggestions/links they have been very helpful.

Not wanting to turn this into a venting thread, everyone has been so helpful and supportive and thank you all for that.

 

[Calliecake]

@StephanieLynn , You have never come off as cold or judgmental. It’s a hard time for everyone involved . In times like what you are going thru, I sincerely think people feel they are doing the right thing and have their family member’s best interest at heart. Often times it’s hard to know what the best decision is. The plan for your MIL may change a few times.

 

[MaisOuiMadame]

It has been my experience that difficult people (MIL) create difficult circumstances for themselves and then they expect the whole world to come and pick up the pieces for them. This pattern can perpetuate itself until the very end. It doesn’t have to be this way.

Wise, wise words, @housecat

DH s grandma fell into this category. She refused to take any precautions whatsoever, despite having the financial means.
She'd been extremely healthy until age 93, keeping active in her in home fitness room and all...
She had a stroke at age 93 and lived the last three years of her life miserably in a top notch caring facility, because she wouldn't accept the fact that there was no other option. Her complete left side was paralised and sadly she was unable to accept this as well. This led to several nasty falls with broken bones(a few days in she wanted to run away and rolled herself out of her hospital bed and fractured her hip ..and that was only the first attempt). It was impossible to keep her in her home for medical reasons, but her mindset alone made it even more unlikely.
If you have an uncooperative patient, like your Mil, @StephanieLynn, be careful to cover yourself as well from any accusations. A care facility is better suited and safer.
People working in these surroundings are used to people getting absolutely nasty - friends and family aren't. Being the voice of reason and seeing the realities and limitations of what can and cannot be done is not cold. It's ultimately in the patient's best interest.

 

[AGBF]

People fall in care facilities, too. My best friend, who was not terminally ill, but had had major orthopedic surgery; was in a nursing home after it; and was on pain medication; fell in the bathroom during the night. She doesn't remember everything, but she was naked or semi-naked and had to be carried out of the bathroom by a very large man. (He was either a nurse or orderly.) She told me about it the next day while crying and laughing. She knew she was lucky not to have been badly hurt because everything is wrong with her. It's no use asking me why there wasn't a bed alarm. There may have been one, but the place was very short staffed and no one came when you rang a bell, so who knows what happened.

 

[Staceyjan]

First, send you hugs! I did not read the comments but I think the "real talk" would be that you would be the best person to provide her 24 hr care. If this happens, remember it is temporary but it is going to be hard work for you. I would also try to get a home health aide in even for a few hours a day.

I also think your husband would definitely admire your for these heroic good deed actions! Good luck!

 

[TooPatient]

Hope all is going as well as it can. You have done very well handling a difficult situation.

 

[YadaYadaYada]

Hey all,

So far so good, SIL went home and won't be back until possibly next weekend and the schedule is working well. I'm glad not only for MIL but also DH, it is an enormous load off of him to have the wheels turning smoothly.

 

[Calliecake]

I’m so glad things are working out as well as can be expected @StephanieLynn . It’s a painful situation all around. So glad everyone is getting along and supporting each other. It’s never easy losing a family member no matter what the family history is.

Please know we are here for you @StephanieLynn .

 

[pearlsngems]

(wrong thread, sorry)