Checking in—it’s getting tougher

Spanky77

Hi, well my DH is progressing a bit more. He was officially diagnosed with aphasia and possible alz, early 2020, but looking back, I see other symptoms before then.

 I wanted to check in to share a quick little bit…I didn’t know who to ask. My DH is dependent on me for showers, toileting, changing, and helping him on our walks. He’s physically strong, but his mind doesn’t know directions too well anymore. He has random screams and he’s extremely afraid of reflections in mirrors, computer screen, Car windows, tv screen. I admit, I’m a bit worn like many of you. I have spoke to some memory care facilities for “down the road”, but it’s heart wrenching thinking about this. My question is when does one know (the caregiver) when it’s time to place your loved one?  My DH still has alert moments. I’m sorry I’m a little choppy here. I was just t curious what others have gone through. I hope he can be home for a long time. Unfortunately, I’ve hired some outside help, but they don’t have male helpers. My DH gets scared or if he decides to bolt outside, I don’t know how it would go. I have locks on the doors.  (It’s still hard, though, as he gets upset and starts banging on the door). 

Thanks for any input. I know some will think it’s time now.  It’s So hard to figure out. 

Thanks.  

billS

In my case it got to the point where I simply could not keep my wife safe anymore. She was turning on stove burners, setting flammable things on the wood stove, wandering outside and falling. My stress level was also endangering my own health, and I knew if I had a stroke or heart attack I would no longer be of any use to her and would have sacrificed my health needlessly.

Ed1937

I always thought it was time when my wife would get better care in MC than I could give her.

JoseyWales

I waited too long. It was time when he no longer recognized our house as his home, and really didn't understand who I was. He still knew my name, but didn't know our relationship.

He also was having trouble sleeping through the night. I was exhausted. 

I think the point of "it's time" can come on quickly, and I think lots of members here would agree. Having a place picked out in advance helps. In my case, the place I picked out stopped accepting new residents, and the second and third choices said no when I finally had them come to assess. But I think I'm the exception to what usually happens.

I had only female caregivers come stay with DH. Even though I think DH would have liked to have someone male come be with him, he had no problems with the female caregivers. 

Sligo177

Spanky,

 I know, such a tough decision!  I thought I could keep DH at home forever.  I just brought my DH to memory care August 1st.  I know I made a loving decision.  I did it because I love him and he deserves the best care.  Now he will have it.  But still feel guilty.  Too soon?  I don't know, I think it was time.  But he's safe and that's the most important thing.  I may have saved my sanity, too,  but we'll see....

  I knew I couldn't care for him by myself at home safely.  The people who came to help a few times a week were just wonderful - but they are human, and you can't depend on anyone reliably showing up at your home, and with you, no males available is a problem! My DH really needed 24 hours a day, because he got up many times at night.  I could never sleep and could never leave him for more than maybe 10 minutes to run and get the mail, worried the whole time that he would fall, or even get lost in the house.  In the end, it was an ER visit followed by hospitalization and rehab.  Everyone has their own set of problems that determine what they have to do.  Your situation is unique to you, I can imagine what a typical day must be like, very hard.

  I was so fortunate I had made arrangements with a memory care facility.  It's what you decide that matters.  It sounds like you are under terrible stress from helping your DH.   If you think you can hang on longer, you will undoubtedly do it.  But please, please take care of you.   

Hoot619

Spanky,      It s up to you when to do it.     Friends told me when they saw me going down hill, that I should check MC out, To get a CELA well that was told to me before and I ignored them.

Just today she threw a cup of oatmeal on the floor and I darn* near lost it. It's past time for me to have her placed.      I can't control DW and it is a fight to get her to let me do anything for her.    It is getting so I'm darn near out of  control.  Lack of sleep , everything.   Don't let this happen to you.  Hoot

Jo C.

The behaviors were over the top and went on the 24 continuum.   It became apparent that my LO was extremely over the moon despite best efforts.  Finally, too much was just too much and the unsettledness and anxiety and demands of LO along with delusional blips at various things in the house were not at all a positive in any way; it became overwhelming.  Multiple things in the house were actually triggers for said behaviors and beliefs.

Utterly surprised that after placement, the behaviors were much better. Socialization in a way, activities whether or not engaged in - even if just watching; different structure and routine with a host of staff to assist and most of all; none of  the triggers that existed at home.  The triggers had been the drivers no matter how much accommodation was made.

Should have made such a change earlier; but I had never, ever wanted to make placement. Such can go one's intentions until reality becomes very relevant.  You have been doing your very best, you will begin to feel when it is time that will be best for both of you.  It is not giving up nor is it abandonment.  He will be safe, secure and cared for.  You will be free to be with him as much as you can or wish, and you will be able to be his loving wife once again as you do not have 24 hour issues to deal with and are no longer exhausted to the core. 

J.

sandwichone123

Hi Spanky,

I've decided to place somewhat earlier than many. My plan had been to place dh when he couldn't recognize me, was aggressive, or became incontinent.

Instead I decided to place him when I felt uncomfortable going to work and was concerned about his being home alone. He is still independent with his ADLs, although sometimes less effective than might be desired. He still knows, and loves, who I am. He's still sweet, although he can say the same thing 12 times in 15 minutes, and I usually don't know what he's telling me. He still helps around the house and sometimes the help is effective (dishes that don't need rewashing, for instance).

I am waiting on the placement evaluation, but have chosen the place and they have an opening this month.

Sandwich

Stuck in the middle

Spanky, your DH is already in memory care.  It is being provided by you, and by whatever help you have.  The time to place him will be when you decide to enlist professional help instead of doing it all yourself.  

From your post, it sounds like he would be safer and possibly happier if he were in a memory care facility.  He isn't happy where he is, with the anxiety he is experiencing.  I think I would give it a try if I were in your shoes.

Paris20

The decision was made for me when my husband, diagnosed with AD in 2015, had a paralyzing stroke in May 2022. There was no way that he could return home. I’ve read so many posts on this forum about the difficulties facing caregivers about when to choose MC. The irony wasn’t lost on me. The choice was taken away from me. 

Another irony is that I can see at a distance how bad he really is. His outbursts, flailing, yelling, etc. already had made me ill.Double incontinence after the stroke was beyond my capabilities. He can barely move. 

Looking back, I realize I was attending to DH’s needs 24/7. I had hired an aide but DH would not let her touch him, so she did all the housework, freeing me to be caregiver. I am finally reading novels, mysteries that I had put aside when all I could do was read a paragraph at a time between complaints and moans. I now have a few hours of peace and rest between visits and it’s OK. Next month we will celebrate our 58th wedding anniversary. 

ElaineD

Dear Spanky,

I understand how hard this is!  I think we often don't 'see' the extent of the losses of our Loved Ones.  We live so close to them, we just don't see.

I know I didn't realize how disabled my DH had become until we moved to Independent Living and I now spend every day in close proximity to my DH.  He has familial vascular dementia (I think).  I haven't been able to convince his primary care to assess him, for some reason.  He puts on a good 'show' and most people don't see how his memory has deteriorated.

My primary 'job' is to keep him on schedule to participate in the activities that he enjoys.   He could not remember to go if I didn't remind him.  I also sign him up for the activities that he likes.

We also don't see the stress/damage to us as caretakers, physically mentally and spiritually.  We are simply too close.  

I often see that caretakers  believe that they are the 'only ones' who can care for their loved ones.  

And guilt is often a strong factor...perhaps a promise was made that "I will never place you in a care facility".

And caretaking sometimes becomes an 'identity' and there can be a 'loss of purpose' when the Loved One is placed in care and the Caretaker loses their job.  

In my case I am the spouse that is disabled!  I have profound nerve damage t several parts of my body. My DH does the laundry, and the dishes.  I have braces and a walker (and also a power chair that I use from time to time). We have food service in a dining room, and weekly housekeeping service.

So I am slowly losing my caretaker to dementia, and I KNOW that I will not be able to help him shower, or dress, or carry out any personal hygiene activities.  I cannot stand, would be unable to lift him, I have no balance, and generally am helpless.

So I KNOW I will have to find placement for him.  There are both AL and MC in our facility.....very expensive.  I think I would pay whatever it takes, however.  The professional staff knows our situation and are here for us, as needed.  

If our assets are depleted I will apply for Medicaid.   And our facility doesn't accept Medicaid, so we will have to move him.

Fortunately we live in a fairly large city, and Raleigh, Durham, and Chapel Hill are very near us.  So we will find the right place, I'm sure.

My younger son will help me with all of this.  He lives less that 12 miles away in Raleigh, thank goodness.

At the present time I would be able to manage on my own I think.  There is a washer/dryer in our kitchen that I could use.  But, of course, I don't know if my health has stabilized or will deteriorate further.  So many variables.  So  I'm taking it a day at a time now.

I am continually grieving the loss of my life companion.  We married when I was 20, and we've been married 60 years.  I have no family who knew me as a child, and now I will lose our marriage history.  

DH is slowly forgetting events and trips over the past 20 years.  I'm not sure what he's forgotten before that.  His favorite thing is to talk on the phone to guys from his home town of 400 residents.  This is the Class of 1957 and they talk about everything from the 50's.  He remembers those things, at present.

I have a therapist that I talk with weekly, and exercise about 3-4 times a week.  I'm in bridge groups, a book group, a women's wine social group, and there are lots of events and socials.  So I'm doing what I can to remain calm and centered.

Love to you ALL.

Elaine

May flowers

We placed my FIL last May when he could still communicate, recognize us (mostly), and do all ADLs with reminding.

We decided for two reasons - safety and boredom. He either wanted to walk 6 hours a day or sit and stare and do nothing but pick at his skin. I could not engage him in anything to interest him, and I could not keep up the hours of walking and pacing. 

Anyway, I’m glad we did it when we did. He liked it and made friends. He could walk the halls and courtyard to his heart’s content, and even had his own walking partner. A series of events changed all that, so he’s home again, immobile and on hospice and utilizing caregivers. While it is harder in some ways, it is easier in others. 

Laurie1282

While my HWALZ is still in earlier stages and can take care of his personal needs, I know that when incontinence happens, I will have to place him in a MC facility. My children were in daycare while I was a teacher because I knew I would be a better mother to them if I had an enriching occupation.  I know that I will be a better spouse to my husband if I can spend time with him in a MC facility and know that he is cared for and safe. It is completely different for every person in this crazy, challenging situation.  I refuse to feel guilty for thinking this way...