Feel like a one-armed caregiver, but doing my best

Comrade

Good morning,

Because my wife and I have limited resources, I have been managing her care for the last 3 years. We have had ups and downs, but lately, her disease is becoming more aggressive.

Sue is delusional much of the time, but am thankful she is not agitated; just inquisitive about things that don't exist. 

More than anything, I am concerned with her weight and muscle mass. She says she is hungry, but her brain sabotages any meaningful consumption of food.

It is frustrating and see her diminished body lose its stamina and mobility.

Her doctor is on board completely and has suggested we may be served best by hospice. They would be in a position to know what to do and when to do something, with professionalism and extreme gentleness.

The doctor had Hospice service her mother for 2.5 years until magically, she improved. None the less, it is a suggested course of action that will help my wife and help me manage all the changes.

Has anyone had Hospice's services and are they as knowledgable and helpful as I have heard?

I am worn out and feel that my care is not enough to insure comfort, health and all.

SusanB-dil

Yes - do get a hospice evaluation for her.

The supplement drink 'Boost', even store-brand to save a couple bucks, has helped us. 

agree - none of 'this' insidious 'thing' is easy. I hate it much!  (I think all of us here, do)

Is there any friend or family member at all who could give you a much-needed break for even a couple of hours? if not each week, at least every-other week?

Jo C.

Hello Barry, this will be a bit long as there is much to share.   Yes; I have used Hospice for my Loved One (LO).   My professional background is as an RN, Administrator of Patient Care Management as well as having a private business performing Quality Improvement assessment for various healthcare providers including Hospice.

Hospice can be wonderful support.  Medicare covers Hospice completely.  If your wife does not have Medicare, many insurance companies also have that as a benefit.

That being said, each Hospice is different from one another.  Some are more beneficent than others.  Some are For Profit, others are Not For Profit. The NFPs are far and few between.  There are Medicare established "criteria" to be met and maintained when being admitted to Hospice and staying on Hospice.  It is important to know that some Hospice entities are far more open for admission than are others.  Most times, the diagnosis of "dementia," for Hospice admission is so stringent that it is extremely difficult to be admitted for that diagnosis. So; many of the RNs that do the lengthy intake in the home will find another diagnosis that fits and is able to admit the patient with that.  Some of this comes from secondary conditions and also other more open diagnoses.

When a patient is admitted, they are "Certified" for a certain amount of time. The first Cert Period is for 90 days. Then the patient is either re-certified as needing Hospice to continue or if the patient has improved or doing very well, they may not be re-certified to continue services. The second Cert Period is also for 90 days. Every Cert Period thereafter is for 60 days.

In my personal experience, I have found the larger Hospices much better at providing care and being available in a timely manner with better service orientation and support than the smaller Mom and Pop ones.

If one does not like the Hospice providing care; if the Hospice doe not work out the issues, then one can change to another Hospice once in any Certification Period.

When needing Hospice, a good thing to do would be to contact three of them in your service area to find out about their philosophy of care and how they provide said care as well as their 24 hour, 7 day a week provision of services should an emergency arise and how often the RN and aide will visit.  You can discuss your wife's situation.  After such calls you will get  feeling for which would be the best fit for you and your wife.  If you do decide to call several Hospice entities, I would recommend not discussing your questions with the nice person that answers the phone.  Instead, ask to speak to the RN Supervisor.  If the nice person asks what it is about, simply say that it is "personal."  That will usually be honored. 

You may want to write out a list of questions beforehand so you will have everything covered.

NOTE:  When you sign on to Hospice, there will be a "no resuscitate" order if the patient should stop breathing.   When you sign on to Hospice, the patient receives all care at home; if the patient is admitted to a Nursing Home, Hospice can continue to follow there.  It is important to understand that when one is in Hospice, one does not go to the acute hospital or to the ER.   Hospice will manage the care needs in the home or NH setting.  One can opt out of Hospice at any time one wishes; that is not a problem.  (If there is an extraordinary situation that Hospice cannot manage, which is quite rare, the patient may be admitted to the acute med center; but that will be SO rare.  Sometimes it is done for excruciating pain that cannot be dealt with in the home setting.)

Hospice does not provide a daily nurse or a daily aide to render care.  You will be assigned an RN who will be your care manager who will make visits at intervals; sometime it will be weekly, other times it may be different. There will be an aide two to three times a week to do the patient bathing, grooming and light cleaning of the patient care area.  You will have a Social Worker assigned.  If you wish it, you will also be assigned a Chaplain. Hospice does have their own physicians to approve orders or make adjustments as requested by the RN, but they usually do not go out to the house. Sometimes, Hospice will be willing to use your own MD for such ongoing care orders.

Hospice can periodically provide "respite care," for the well spouse or well caregiver need for relief and rest. The Hospice patient can be admitted to a Medicare certified NH for care for five days and five nights. Hospice can describe this to you.

Hospice will usually come out to assess the patient for possible admission either the same day or the following day after calling them for service.  The RN doing the assessment will not be the same RN that will be assigned to your LOs care.  The intake is very detailed and lengthy; it is a requirement that Hospice does this.   When the LO is accepted into Hospice, they will make arrangments for patient needs almost right away.  Hospice financially covers most needs.  If a hospital bed is needed, they will have that sent in the same day; wheelchairs, patient lifts, etc.  They also provide a kit of meds to have in the house; it will address pain, constipation, anxiety, etc. 

If later, you do not feel the RN or aide is a good fit for you and your LO, you can call the Hospice and tell that to the Supervisor; most often, a change can be made.

As the patient becomes more ill; especially at the end stage, the RN visits will become more frequent.  Sometimes they will be there each day. Just remember that the bulk of daily hands-on care will still be provided by yourself or someone you pay to assist. (There are rare instances of 24 hour care at the end of life when the situation is extraordinary, but it is often not usual.  You can ask about that if it is a concern.)

Sometimes patients are accepted into service right away. Other times that does not happen as the patient does not fit Hospice criteria; but when the patient's condition advances, then the intake assessment will be re-done and the patient may possibly then be accepted.  NOTE: If one Hospice does not accept your LO into service, call another to come and assess. Sometimes the outcome will be different. Remember; some Hospices are more beneficent than others and also, there is a difference in the assessment RNs; some are far more skilled than others. 

Hospice has been wonderful in their support. They are there not only for the patient; they are also there for the family member and they are serious about their support of said family.  When the patient passes away, they will also have a grief support group which can be very helpful.

So hope you will find the support you need.  Let us know how you are doing, we truly do care.

J.

dayn2nite2

Hospice would be something to pursue, but it's not really going to give you a break from caregiving - at-home hospice is still pretty much you doing everything, a bath aide may come once or a couple of times a week and a nurse the same.  Visits are short.  You do get a 24-hour number to call and things like a hospital bed and other equipment/supplies, though.

Comrade

Thank you "J" for your very informed reply. Yes, my only experience with Hospice in Louisville was back in June and July. They took care of my mom until she passed away.

Here I am again having not even the time to grieve a parent. But this is life.

I am waiting for them to get in touch, since Sue's doctor only made the referral this am.

Thank you again.

Barry

Jo C.

I am sorry for all that has happened and is happening.   From experience I understand how difficult it can be to take this step.

Just for future reference, it does take a doctor's order to have Hospice begin services; but you can make the decision to have Hospice and which Hospice and ask for them to assess your wife; it does not take a doctor's order to do that.  It does NOT take an order to decide which Hospice you wish to have and to have them come out to do an assessment - in fact, the Hospice service will actually get a doctor's order themselves once the decision is made for actual Hospice services to begin.  

I wish the very best outcome from this for both you and your dear wife, Sue.

As for the delusions; my mother also had FTD and she was very delusion driven.   It caused dreadful behavioral situations.  When it became over the moon so to speak, the dementia specialist prescribed Risperdal.  We were blessed in that it was tolerated very well; no side effects and it was amazing in the results. All delusions dread behaviors were quelled.  One of the larger set of delusions had to do with food; that too greatly improved.  She was on the med for several years until she passed away from an unrelated cause.

I am not recommending the med, this is only one person's story and each patient is different.  All meds have potential side effects, so one must move forward with caution; we started low and went slow.  What I really wanted was an improved quality of life for my LO as much as could be under the circumstances and that did happen.  No matter what; the disease does continue to advance and of course, there is no stopping that.

You have been an excellent advocate for you dear wife as I have also seen on the Spousal Forum.  She is blessed to have you by her side.  Please let us know how you are doing, we will be thinking of you.

J.

mommyandme (m&m)

Our hospice has volunteers to provide respite for caregivers. For us it’s only once a week for two hours but it’s better than nada. If your wife qualifies maybe that might be helpful.

LicketyGlitz

We've been through hospice twice, Comrade. With my dad, the group was competent, but not all that great. With my mom, we could not have made it through her end-of-life without them. Hospice can vary in services offered so do a little poking around, but I'd whole heartedly recommend you get them on board for both you and your wife's peace of mind!

Comrade

J,

They came last night, assessed and agreed to help. It was the first night in months that I slept and felt Sue was being managed with total respect and sensitivity to our family.

Comrade

Hi Susan,

Yes, I am starting help this weekend for 4 hours, which will allow me to do whatever I please.

It is a grant and will last for 20 weeks.

SusanB-dil

That is very good to hear.  Glad you slept better as well.

Mint

Glad to hear you were able to get a little relief.

Rescue mom

Glad to hear it’s working. We had hospice for mom, and I thought their services were invaluable. The more expert eyes, the better, in my view. They provided all kinds of specialists and services, on call with quick response and often as needed. I considered them priceless, and will use them again with no hesitation. 

My only “caution” would be regarding my experience with respite and daily custodial caregiving, as someone else already mentioned. Although this hospice said they had volunteers who would visit/watch for a couple hours, that was “as available” and such volunteers were basically nonexistent. The few who started volunteering didn’t last long at all (understandable, but I was hoping at first).

We ended up hiring others from elsewhere for that/respite/companionship, etc., ,which sounds like you have already done. All good. 

chik

Keeping you both in my prayers, I was the caregiver for my husband for 6 years until he passed. It was the hardest task I ever experienced. Would do it again, I had no Hospice help. I luved this man for 37 years, always in my heart. 

Take care of yourself.

May flowers

I am glad hospice has started and it sounds like you will get some respite quickly. My FIL was approved for hospice last week and we have gotten supplies, a better medical bed and the intake nurse is wonderful, she has called every day to check on him and us. We haven’t had our case worker visit, or nurse visit yet, just the chaplain (who is wonderful guy). Anyway, I was told that they would try to get a volunteer to give us a few hours a week but it depended on availability. A lot of volunteers left during covid, so they are short-handed.

Comrade

YES.

The intake nurse was extraordinary. I was nervous for some reason, that she wouldn't see what I have been seeing or experiencing. I wanted my wife to be accepted and helped.

So far, her nurse, a social worker and a spiritual adviser have visited and all at once. The nurse spent about 10 minutes with my wife and immediately suggested supplies.

YES.

They are exactly whom they say and do as they promise very quickly. Even a mention of difficult brushing Sue's teeth was met with a supply or dental sponges in a big box.

Sue's friends are incredibly supportive and actually much more calm than myself. They see the big picture, while I rearrange the fragments on a daily basis.

NO.

A family friend who is her psychiatrist and asked to help treat her, has not contacted me. I texted him with my decision based on Sue's primary care doctor and her discussions with other doctors in her office. 

I am disappointed, but reserve judgement that he is just busy and not "offended". I can't be obsessed or concerned with his behavior.

So far, Hospice has had a small footprint, but know from previous experience, that they will be here when I need them.

SusanB-dil

It sounds like a weight has been lifted!  That is excellent.   

It is good the friends are supportive.  A lot of us have found that many 'friends', and even family, tend to scatter. I just figure they don't know how to handle it.  The ones that stick around are the real friends.  Glad you have that.