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I have heard “do one move only” - Truth to it?
Pirokp
Posted: Friday, October 4, 2019 11:43 PM
Joined: 9/15/2019
Posts: 30


Hi,
I have had a few people give me general advice and tell me only to move my Dad once, and I wondered if there is any truth to that.  If I moved him home with me (several states away), took care of him for as long as I could, then when it was needed move him into a home, is that too hard on my Dad?  I think he is stage 5 (ALZ) but he has a few things in stage 6 also.  Can I care for him do you think or should he be in a home at stage 5?  He still has all bodily controls, sponge bathes himself but doesn’t shower.  He can dress himself fine but I help pick out his clothes.  Physically he is active and can walk great, we even do a nightly walk.  

ruthmendez
Posted: Saturday, October 5, 2019 12:03 AM
Joined: 9/8/2017
Posts: 2105


He could suddenly decline more into stage 6. Are you considering bringing him home?  Before you do that, I would recommend waiting a couple of months.  You both need to adjust to this new move.  And something else might come up.

My dad was probably at stage 6ish for a couple of years (still with stage 5 symptoms), then non-ambulatory.  I probably picked his clothes for a couple of years.

If you're not ready for that sudden change (non-ambulatory), leave him where he's at.  And he is at 24/7 required care by now.

My dad walked great July 4th, 2017.  By January 1st, 2018, no longer able to walk on his own without falling. Non-ambulatory ever since.  My dad most likely has Alz disease.


Pirokp
Posted: Saturday, October 5, 2019 12:17 AM
Joined: 9/15/2019
Posts: 30


Thank you for your reply!   Yes, I want to bring my Dad home with me.  I am caring for him now in the home he has lived in for 55 years.  He doesn’t have the money to cover in home 24/7 care so it’s me.  I am retired so that’s okay, but I can’t spend my life living away from my husband and my grown kids.  They are all 1,000 miles from where my Dad lives.  I can’t move in permanently with my Dad, I need to live with my husband and where my life is.  I need Dad to come to where I live.   

I could put Dad in a Home here (in his community).  He has one good lady friend but I have my doubts if she would visit him in a care home.  If she didn’t visit then he would get no visitors as no family members live in the state he is in.  

I am shocked to hear how fast someone with ALZ can go from walking to not walking, so shocking   My Dad scored a 9/30 on the MME test   

 


abc123
Posted: Saturday, October 5, 2019 12:28 AM
Joined: 6/12/2016
Posts: 525


There are soooo many things to consider. Are you married with children? Would your husband help with caring for your Dad? Are the children young, they might upset your Dad. Is your house child proofed for safety reasons. A PWD STAGE 5/6 are like children and keeping them safe is our first priority as a caretaker. Do you have siblings who would step up to help? You will eventually need to take breaks for your own well being. So very many things to consider and no matter how hard you think this will be- it will be harder than that. If you place your Dad in a facility near your hone you can visit him as much as you like and still have a life of your own. Others will come along and offer up some excellent advice and share their experience. I don’t think it’s a good idea for you to rush into anything. I wish you the best!
ruthmendez
Posted: Saturday, October 5, 2019 12:43 AM
Joined: 9/8/2017
Posts: 2105


Oh, I see, Pirokp.  I assumed he was in a care facility already.  Yes, I would bring him home.  Or care facility very near you, if possible.  If your home, to facility (two moves) I wouldn't worry too much about it.  I think you'll do everything with caution.
harshedbuzz
Posted: Saturday, October 5, 2019 5:21 AM
Joined: 3/6/2017
Posts: 1684


I suppose it would be great to move once, but it isn't always practical. I live by the mantra of making sure the current placement is as appropriate as possible with a Plan B (and C) up my sleeve. 

Only you and your family can make the call whether your home is preferable to a MCF for care. There are pluses and minuses to both situations. 

The general rule of thumb is that a person is considered in the stage for which they have any symptoms/behaviors. If he's got a foot in stage 6, most would consider him stage 6. The MMSE score is consistent with a more severe stage.

HB

Janice.alone
Posted: Saturday, October 5, 2019 7:47 AM
Joined: 10/12/2018
Posts: 61


I would vote for only one move to an appropriate care facility near you.     Reading so many of the posts here will demonstrate what an difficult task it is to care for a dementia patient at your own home, no matter how prepared you may be for the experience.   You already realize how quickly a PWD can digress to non-ambulatory and that's a real game changer.

A move from his home will be traumatic enough, but to compound that with a second move within months or a few years.....    I guess the decision to bring him to your house depends on the level of  mental frustration and physical work you are willing to expend.   So many wonderful people here find it a joy and honor to handle the 24/7 care necessary for their LO's.    I am not the type of person who could have done that and maintained any shred of sanity and my husband's medical problems would have compounded the situation.

When I moved my mom from her cottage (on our property) to AL, I was blindsided by the impact it had on her fragile mind.   I didn't realize how much her brain had deteriorated and that I should have moved her to MC right away - the AL ship had sailed.   At the time of the move, she was still dressing, showering, taking care of her cat and some other ADL's.   She was way past cooking and was forgetting how to use the phone, remote control, coffee maker, etc.... and her executive function and reasoning ability were pretty much gone.  Hallucinations were becoming a part of her day and night.  The biggest issue with her was her lack of balance and refusal to use the walker resulting in constant falls and trips to the ER.     AL was not nearly hands-on enough, although the aides really made a valiant effort to help her cope with the move and using the walker.   The BIG fall happened a week later and her broken femur was the beginning of the end.

I guess the lesson learned from my experience is to get your father into the appropriate level of care on the first move.  Carefully consider the impact it will have on your family's lives too, not just your dad's.


Jo C.
Posted: Saturday, October 5, 2019 11:53 AM
Joined: 12/9/2011
Posts: 10040


You are a kind and loving daughter who is doing her very best.  There is not one answer that would suit everyone.  Many of us have had to make changes in living settings more than once; some tolerate it well, others not so much.  It variees person to person.

Moving your father far from home to a new place may engender a feeling of insecurity and feeling lost no matter what. 

If he is moved, but is with those he knows, such as yourself and your family, he may feel a bit at odds but he will be with those he knows care and that can help.  You can even say to him that he is going to visit on vacation with you if that helps to move him.

If your home and family cannot accommodate your father, then the decision must be made as to what the "Plan B," will be.

If you have room in your home and your family is accepting of your father coming to stay for a period of time whether that is months or years, then that is one option.  I would suggest having a clear conversation with family in conference first; educate them on dementia and what your father's condition is like and how best to communicate, etc.along with what soothes him or what causes upsets in him if that is an issue.

I would have a room set up and ready; if there is room for an easy chair and TV in that room he would have a, "getaway" place to retire to if he does not want to be with the entire family at times.

You will need to establish him with a primary MD as well as a dementia specialist either way, so that is on the "To-Do" list.

It will take a bit of time for your father to adapt as well as the family to having him in your own home.  Adaptation can take a couple of weeks to a couple of months.  It is a new way of being for everyone.

As things evolve, or if they do not work well after some months, then one can make arrangements at an appropirate care facility that is nearby so you can keep an eye on things and visit when you wish.  Even if our LO is going to be living in our home, it is always good to have a potential, "Plan B," in mind should things abruptly change.

One option to gain a bit of assistance would be to have the doctor at home order "Palliative Care," for him. That is NOT hospice, but is help for people who have a chronic illness likely to eventually lead to death.  One can still get treatment at a hospital including life-saving treatment, one can have all medical care one would opt for.  Palliative provides an RN who comes to check the patient at intervals, as well as a bath aide a couple times a week; there is also a social worker as part of the team.

If your home and family can make Dad welcome and manage with a new family member in the house, it may be a good transition until some later date when more care is needed than can be provided. 

To help family understand dementia, here is a link to a very good writing on the basics. It is,"Understanding the Dementia Experience," by Jennifer Ghent-Fuller:

http://www.smashwords.com/books/view/210580

Let us know what you decide and how it goes, we will be thinking of you,

J.


GemsWinner12
Posted: Saturday, October 5, 2019 11:54 AM
Joined: 7/17/2017
Posts: 373


There are a lot of unanswered questions here for you to ask such a general question, but can you clear out and sell your Dad's house to pay for care in a facility near your house?  That would be one option that wouldn't put you in total charge of a later-stage Alzheimer's patient pretty much on your own.  If you chose to bring him into your home and take over his care, it could very well strain your marriage and your family life as you know it now.  You've already established that he cannot remain in his home alone, and there aren't funds to pay for around the clock care in his home.  Would selling his home to pay for his care in a facility near your home be an option?  Talk to your husband and make sure you understand the gravity of taking on such a responsibility; are you physically strong enough?  Will your husband or other family members help?
Pirokp
Posted: Saturday, October 5, 2019 12:06 PM
Joined: 9/15/2019
Posts: 30


Thank you everyone.  

ABC123 asked a few questions I thought I would answer.  My husband and I are both retired, our children are all adults living on their own, but are close enough we see them several times a month.  My husband would help but I could see how caring for my Dad could be a strain on our marriage. We were just settling in to retirement, doing some traveling, enjoying being together.  We recently bought a new home, one we could age in place in. It’s all one story and no stairs, plenty of guest rooms each with their full bathroom.  My Dad would have room and be safe (I hope!).  

He is going to be miserable and hate it, either at my house or a home. How can I put him in a home, he is still with it to know I am putting him there and he is only going to want to go home.  He has lived in his home for 55 years, 35 of those years alone as a bachelor.  


Mike&BrendaTX
Posted: Saturday, October 5, 2019 12:48 PM
Joined: 7/10/2017
Posts: 616


Pirokp,

May I suggest that when you do decide to put him in a facility of some sort, there are more and more where you start as independent living, move to assisted living, then to memory care, all the while staying in your same "apartment."  Makes moving less of a deal.

No matter if you move him to your home or place him somewhere, he is always going to want to "go home."  This may not mean his house of 55 years, but often it means back to a time when everything was happy. As one book on Alzheimer's noted, "home is a feeling, not a physical place."

Mike


King Boo
Posted: Saturday, October 5, 2019 10:10 PM
Joined: 1/9/2012
Posts: 3041


I'm going to guess that whomever said "move him only once" either has very, very little experience or knowledge with the constantly changing care needs of a progressive disease, or else struck gold with their first choice of a facility that had Memory Care and a nursing home together.

Once and done is not how this disease works.  Hospitalizations will happen; rehabilitation in a nursing home after a hospitalization will happen; you may find that the first facility can only provide care to a certain point or that you need to move for better care.  Or need a nursing home, or a hospice inpatient unit.

Don't waste anytime fretting about it. His care needs will drive the need to make decisions.  

I personally found Stage 5 to be the hardest, most frustrating and it was hard, hard, hard, to navigate the fractured reasoning and the bathing resistance.  I frequently think of his caregivers who were amazing at Memory Care.  


harshedbuzz
Posted: Sunday, October 6, 2019 5:32 AM
Joined: 3/6/2017
Posts: 1684


^^^^^
What King Boo said.

It's really hard to anticipate the trajectory of the disease at it progresses. I had to move my parents in order to help care for dad. In the space of 21 months he ended up with a hospitalization, followed by rehab in a SNF for 7 weeks, followed by a stay in a very nice senior apartment community for 4 months until we found a lovely carriage house in a 55+ community with a weekend in a hotel so we could move him more easily and finally into a MCF. It would have been less work to move him once, but the best we could do was best available under the circumstances

I, too, found stage 5/early 6 to be most difficult for all of us and specifically the time after deciding placement was necessary until it was accomplished to be gut wrenching. 

Mike&BrendaTX- that's an interesting model I have not seen locally. I could see where that scenario would be logistically easier than the typical CCRC model of starting in an IL cottage, moving to a AL apartment, then a "personal care" or MC suite and finally onto SNF if needed. I have a friend living this with her mom who is 93- cognitively she's fine but broke a hip. She's had to move back to her cottage at discharge from rehab/SNF or risk moving up to AL or PC in another part of the campus. A policy like this would be great for her.

How does that work around situations like cooking or the need to deal with exit-seeking?

HB
shw
Posted: Sunday, October 6, 2019 6:30 AM
Joined: 2/20/2017
Posts: 18


Wow - I haven't been on the boards in a bit, but signed on this morning and your letter hit home for me.
My dad moved in with us over 3 years ago, due to mild-mod dementia and physical issues. Physical issues settled down, dementia has progressed to mod-severe, and we are in the midst of moving him to memory care unit. I had some folks comment to me about the "1 move" being easier. I think there's no way to know ahead of time what will be better. My dad, years ago, would have adamantly refused to go to a place. Now, visiting the place that he is moving into, he seems to like the environment. 
My response to you is to trust your gut and, as others wrote, take your time to figure it out. You know your dad and you know yourself. Nothing is written in stone. I will tell you that taking care of my dad was very difficult - time, energy, unplanned and unforeseen issues that arose, and just our complex dynamics. I am sad to see him move, but I know it is what's best for both of us now. 

mostlyme
Posted: Tuesday, October 8, 2019 12:45 PM
Joined: 12/17/2018
Posts: 240


I never moved my mother in with me so don't have experience with that.  But even caring for her outside of my home was a challenge for me emotionally and time-wise.  I don't think I could have coped with her in my house.

It sounds like your Dad is an independent guy and MC might be premature for him.  Ideally it would be great to place him in a facility that has AL and MC in the same building.  The transition that way would be simple.  And often they are brought to the some of the same events so he would still be in familiar surroundings and even with people who are familiar to him.

The move to AL might end up to be short lived but this way your Dad still has his independence, he will meet people of his age at meal times and during activities and there is the option of having help with showering etc. as well as nursing care while he is still living in AL.  And, of course, you are in the area so can visit regularly and help him out.

Best of luck with this decision.  It's tough as none of the options are what we want.


Pirokp
Posted: Tuesday, October 8, 2019 3:20 PM
Joined: 9/15/2019
Posts: 30


Thank you everyone!!!   All very good advice, and lots to think about.  My gut is telling me he needs care, maybe assisted living first then memory care?  He is a very independent man who is fighting me every step of the way.  Sometimes I think “I can do this, he can live with me” then other times I think he needs to be in a care home.  He verbally is not nice to me, and I have shed so many tears.  I keep thinking this isn’t a healthy environment for me, and how can I bring him home to live with my husband and I.  In a rare moment of smiles and clarity I asked my Dad where he wanted to grow old.  His house of course but he said he never wanted to be placed in a home.  How can I do that?  I think he’s stage 5 with a few things in stage 6.  At what stage do people typically find their loved ones need AL or MC?
mostlyme
Posted: Tuesday, October 8, 2019 4:20 PM
Joined: 12/17/2018
Posts: 240


I 'encouraged' my mother to check out AL when she first started showing signs of AD.  Her bills weren't getting paid, she would wear her slippers outside in the winter and ordering her weekly meals (through a meal service) became too overwhelming for her.  But socially she was still very much on the ball and she took care of herself (dishes, laundry, showering) quite well.

She moved into AL and with my help, stayed there for a year and a half.  Because it's so routine, she was fine.  She could even do her own laundry although that was a service they provided.  She also did her toiletries on her own just fine.  It did take a lot of work on my part to help her at the beginning.  And I hired her old housekeeper to be her companion so even when I wasn't around, there was someone who could visit with her.  I also hired another friend to take her to the exercise classes they had downstairs a few times a week as she was more comfortable going places when someone was taking her.

It wasn't until she couldn't figure out when the meals were being served that I determined it was time she went into the care section.  I had tried so many different clocks and had reminders that would tell her when to go but she didn't remember to wait for the reminders!  It's amazing what will finally bring you down.  That was an exhausting time.

I got it to be her decision saying that there are helpers who will tell her when to go to meals and there's always a nurse around if she should have pain (she had been having hip pain).  She agreed it would be a good idea.   The care section in this facility wasn't a locked unit.  I wasn't too concerned with that as she wasn't a wanderer.  Even though she had friends in the care section (many of them still went to the main dining room to eat so my mother knew a few), it was still a big transition.  When a person goes into care and has someone checking to make sure they brushed their teeth and asks if they had a BM is disconcerting.  And the next morning when they tried to shower her, it was a nightmare.  She wasn't having any of that.  In her mind she was fine and then didn't really know why she was there!  I kept her options open and told her to try it out and see how it goes but she could move back if she didn't like it (no she couldn't!).  I encouraged her to get used to it first as it's so hard to move.  There was a fella in there who she had been friends with when he was in AL and I knew it was very hard on him when he moved there.  I kept telling her that and used him as her emotional sounding board.  She kept saying "really, he found it hard?"  "oh yes, it is hard when there's such a big change but he loves it now" (he actually did).  I made sure to be there a lot so the adjustment would go smoother.  I also helped her shower for the first several weeks and then they were able to take over once she was used to the place.  

That facility went sideways as she progressed and she started not sleeping.  Her anxiety became an issue and the medication they insisted on made her agitated.  That's when it got really hard.  It was suggested that it's time we move her and I was happy to get her out of there as they were so rigid in their outlook.  It took many months for the place we found to have an opening so between me and her companion we were tired of being there so much.

She has now been in MC for 6 months and it's fabulous.  She's happy, not on any medication for her anxiety anymore other than the supplements I give her and I'm breathing again.  She is now at Stage 6 but she progresses very slowly.  She still talks and socializes but she is getting further from reality.  Her newest thing was introducing me to the poster of her I put on her door to show her where her room is.  She calls her Grandma and thinks she's real.  Oh well, she's happy and that's all that matters to me. I said hello and it was nice to meet you.

I hope that gives you a bit of a snapshot of one person's journey.  Good luck!


twills83
Posted: Thursday, October 10, 2019 12:03 AM
Joined: 10/9/2019
Posts: 23


"I have had a few people give me general advice and tell me only to move my Dad once"

 

I also heard the same advice from the owner of the facility my Dad is in.  He said it is important for Alzheimer's / Dementia patients to settle somewhere calm and quiet, not to travel, not to move, not deal with time zone changes, etc. 

Curious what others have to say.


King Boo
Posted: Thursday, October 10, 2019 7:05 AM
Joined: 1/9/2012
Posts: 3041


Stage 5 is way beyond Assisted Living.  Unless it is really Memory Care with an AL high acuity label due to state licensing issues.

 


SunnyBeBe
Posted: Thursday, October 10, 2019 8:56 AM
Joined: 10/9/2014
Posts: 701


Pirokp,

I'd consult with an attorney or expert on what types of benefits your father may be entitled to.  It varies by state. Some states have resources for people who have dementia in MC units. This is based on income and assets and some assets may be exempt, such as a home.  An expert would be able to tell you what he might qualify for. My state offers financial help for AL and MC for those who a doctor says needs the assistance and they qualify financially.  That will let you know what the options are.   

I'd also explore an assessment to get an objective opinion of what level of care he needs. Just because someone may be coherent and oriented, doesn't mean that they don't still need total care with their daily activities. AL will remind residents and assist them, but, there are limits and often if it's private pay, each service is billed and it can really be expensive.  

My LO went into regular AL seemingly doing fine, but, within a couple of months, she was wheelchair bound, double incontinent and resistant to almost all efforts to assist her, like refusing bathing, meals, etc. I had to move her to MC by doctor's orders. But, that transition went well and actually, she was much happier in MC, since, her needs were better met there. 


Eric L
Posted: Thursday, October 10, 2019 10:57 AM
Joined: 12/5/2014
Posts: 1113


I think the "do one move only" is actually more related to figuring out that you should accurately assess the level of care that is needed now and in the near future. If a LO is on the border of AL and memory care, it's probably best to place them in memory care.
 
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