Should I take my dad home again?

Helma, While I totally understand you wanting to help your dad, there are definitely problems on the horizon if you take him to live with you. I worry about your ability to work away from your apartment, while all the time wondering if he's going to start a fire or wander off etc. Plus he's going to keep getting worse with the dementia, though no one knows at what rate that will be. My friend lives in a low income apartment for seniors/or disabled and she tells me there are many people in her building that don't speak English. Most of those people are either Asian or Russian but she's able to get the idea as to what they need or want if she keeps at it. So it is possible for your dad to communicate to those that are willing to listen. I guess my point is, sit yourself down and go through all the scenarios in your head about your dad living with you. I think you should take the time to think of the worst case scenario as to how it could possibly go having your dad live with you, and see if you can do it. It's going to be much harder to move him out of your apartment/house and into asst living or whatever, rather then move him while he's already living apart from you don't you think? I tend to be more logical I guess, so that's how I would approach it. Good luck either way.

Bless you for considering this. Your father is very lucky to have such a caring daughter.

In some ways, having Dad living with you might be very good for him. And taking this opportunity to work on your degree might be good for you.

But ... how long can you afford a leave of absence from work? Your father is relatively young. You don't mention other chronic conditions. This could go on for 20 years!

Dementia gets worse. Wandering may increase. Total incontinence may be part of the picture. Sleep problems may develop. Dad may no longer recognize you. Perhaps he will have mobility problems. I know that you will continue to love him through the progression, but caring for him 24/7 will take its toll on you.

Dad may reach the point, if he isn't there already, where 24 hour supervision is required. Having trained people available, in shifts, who are well-rested, get breaks, can call in backup help instantly, and who have lives outside of caregiving, may be best for him.

Caregiving one-on-one in a private home, 24/7, is VERY isolating. What about your own need for social interaction? I am glad you are thinking ahead to respite care and homecare. Will that be enough to provide some normalcy in your life? I doubt it. But think it through as best you can. Imagine yourself two years from now. You have your degree. You are back at work. You work a full, demanding day while someone else is in your apartment with Dad. (Will finding someone else who speaks Dutch be feasible?) You run errands on you way home. You come into your apartment and greet Dad (who may or may not know you but who will probably be glad to see you.) The paid caregiver leaves and you start dinner preparations. You have to stop and change Dad's disposable underwear. He tried to do it himself and its a real mess. After dinner you do laundry, taking Dad with you because he can't be left alone. Later you go through all the preparation for bed, helping Dad with his hearing aids, brushing his teeth, changing his underwear, and getting him into pajamas. Now you finally have some time to yourself. It is 9 pm. Tomorrow will be a repeat, except you have to take a half day off work to take Dad to the doctor.

If you are working that relieves some of the isolation for you, but 24/7 caregivers have an extremely hard time maintaining a social life.

Read about caregiver burnout. Understand the pitfalls of what you are contemplating for yourself.

If Dad goes to a nursing home, you are not home free as far as time committment and stress levels go. You will be his advocate. You will see that he is getting the best care available, and work to resolve it when something is interfering with that. You will visit him often and regularly. If he is an early riser perhaps you will have breakfast with him on your way to work. Maybe you'll have dinner with him a few days a week. One caregiver I know tucks her loved into bed each night, reading to him and soothing his anxieties. You will take him on outings to the park. You will bring him to your apartment occasionally. You will still be an integral part of your Dad's care, and that still impacts your social life. But chances are good you could still have a social life.

You need to consider not only what is best for Dad, but also what is best for you. You are each unique individuals, fully worthy of the chance to have a fulfilling life.

I wish the best as you struggle with this difficult decision.

Thank you both for these wonderful comments. It is strange how even though i have already been through some of the caregiver burnout when he was living across the hall from me (he used to knock several times a night on my door, thinking it was time to go on an outing, and i only worked part time to be able to be with him more) i tend to think of only the benefits to him, and forget about the severe restrictions on my own life. It is just so heartbreaking not to do the absolute best thing for him; and it is Alzheimer's that he has, can't believe that i didn't say that specifically in my first message, it started as suspected vascular dementia but has in the meantime been properly diagnosed. My grandmother had the same thing, and stayed at home (in Holland) with a son until the very end, and i think i have that image in my head, of my dad being allowed to putter away at home in a limited environment as he declines. There is nothing wrong with him physically, and this has gone very quickly.
I really appreciate your thoughts, and do recognize that this is also about my difficulty with placing him in a "final" setting, one that looks different from what i was raised with, even though i work in this field and know that this is probably best for him, to be in a facility with 24/7 care.
Some days this is more difficult than i can bear, and yet i read about others who seem to have it much worse, and i really feel for them and consider us to be lucky in many ways. My dad is very upbeat and positive and has no aggressive behaviours, and is easy to please when i can spend time with him.
@jeannegibbs: Thanks very much for pointing out what i will still be able to do with him, which is largely what i do now already. I think this is part of the grieving process, to want to "fix" it all, but it can't be fixed. We can only do what we can sometimes, but accepting it is a completely different struggle some days. I would rather do more and work harder, than deprive him of what i can give him, but it would become unmanageable at some point, and he is already used to living with others around him now. You are right that we both deserve to have a fullfilling life, i tend to forget that sometimes in my worry for him.

@terrimerritts: While i appreciate your acknowledgement of my being a loving and involved daughter, i really don't think it is acceptable to make the judgemental statements that you have made here. All nursing homes are not warehouses, (i won't even repeat what else you said there, too offensive to me) but i do think that smaller group homes are a much better environment for many older people.
In Holland, my grandparents moved into an assisted living house, a small townhouse close to a hospital and nursing home wing, and received PSW support daily. Here in Canada, the Alzheimer's Society is working together with Community Living (for the mentally challenged) to adapt their group home models for those who suffer from dementia and Alzheimer's Disease. These are two examples of assisted living care that are better than a large home with a mix of people, but i can assure you and anyone else that i have worked in and seen nursing homes that are wonderful, supportive, community-supported and compassionate places for the ill and elderly without family.
Thanks for the link to Exelsior College.

my mom is in a NH-she never wanted to go- and i promised -she wouldnt-
however she did-
very clean place, but a nh is still a NH-
she will be another old person, in a warehouse- that needs to be "managed"-
with my situation, she is over medicated, left alone in bed often, no one familiar-to
hone in on her specific needs-not really- she gets used to the routine- but there isnt enough staff- there never is-
and no one will be as attentive to the little things that can make a diference-
i dont know- i guess there does come a time when it u just cant manage the way u have been-
where she will need so much help, and may not know whats going on- and wont know u-
but i see, some part of mom is there-
the thing is, my mom and i could connect- she has aphasia besides dem/alz/and medical issues,and no one would know what she is saying-they would just say she is making no sense- which might be true but in her head there is something very real and specific she is try ing to convey ,to express a feeling- people with dem/alz do still have feelings and emotions,and sometimes that is not taken into consideration.-Body language is something else forgotten- they can understand body language more than words- and we are saying much more than we realize.
no easy answers- every person is different-
but they still have feelings and emotions, did i say that already?the fact that so much is changing in their brain , they are losing control of their life-their body-and they are scared-anxious-fearful,aggitiated,angry ,sometimes the only way they can react is hostile- remember-the brain is not
working as it has-it is having connection problems.i think in order to be able to care for someone with this horrible disease,medication is too often used to
keep everyone under control-calm- but are we being fair to the people who
cared for us, i dont know what the answers are- it is so frustrating, but everyone is different-with different ways of coping/
we often forget that we have to be kind to ourselves too, and think about our own mental and phsical health.
sorry for the rant- as u can tell-i am still having a difficult time-
so glad u shared-
huggggs
k

I notice you already have a lot of good advice, Helma. I just wanted to add that I have been through some of the same. My mom likes hearing my Platt deutsch. (It is a spanish speaking world we live in.) May be you can bring some of the comforts of home with you on your visits to the nursing home? You sound too young to be burdened with all this. My mom wanders at night and falls asleep sitting up during day too.

terrimerrits: Over and over again I've seen adult children, overwhelmed with their parent's care and struggling to maintain their relationship with them, who have re-found the joy in their relationship once the stress and worry of keeping their parent safe and healthy was shared with an AL or SNF.
Please stop characterizing people who have chosen caregiving as their profession as being wardens of a "warehouse for disposable humans." That is as false as the opinion of those who say that adult children keep their parents at home only to preserve their inheritance. You are entitled to your very strong opinions about caring for parents at home, by you are not entitled to disparage others for making the equally loving and equally appropriate decision to care for their parent at a senior facility.

Isn'tEasy... I couldn't have said it better. Terrimerrits, every time I see one of your comments, I cringe, getting ready for the judgements you make on people you don't agree with. Its sad, really.

IsntEasy,
you are right- i agree-but-
i am still so very angry- i dont mean to" disparage others "from making their decisions.
i just needed to vent- not to tell anyone else how to feel-
i will watch what i say-
i respect your opinion, please respect mine-
k

@krnhersh: I'm sorry, you misunderstood. My comment was not in response to your comment.
If your mom is in a nursing home where she is being mistreated or her care is neglected, you certainly should 'make some noise' about it. Meet with the executive director of the facility, hear their view, share with them yours. Itemize the issues, and agree to a plan for improvement. Make an appointment at the meeting to sit down again in a month or so and review progress. If your mom is still not receiving better care at that point, make plans to move her to another facility.

Thank you, EGLord, for a very sensible, compassionate response. I am in the tenth year of caring for my husband at home, with Lewy Body Dementia. (Tomorrow is the 39th anniversary of the day we publically proclaimed "for better and for worse, in sickness and in health.") I have promised him over and over that I will always see that he gets the best care available and that I will never abandon him. And we have also discussed how that promise might be carried out with him in a facility where round-the-clock professional care is available if that need arises. I will not keep him home when that is against his best interests.

The notion that a nursing home is a warehouse is only valid if the family uses it as a warehouse.

Hey, EGLord... I'm not sure that we're supposed to be promoting our own websites on Agingcare. I keep seeing your website contained in almost every comment you've posted today. Does anyone know whether this is okay?

EG, this copied and pasted from "Forum Etiquette" : ...Also, do not promote your business, website, email address or other contact information. Posts that include self promotions will be removed. And, actually, to be frank, you have offended me some. I do think its a little off-putting to sign every post with a title and your website info, sometimes not even reading the 1000 posts to catch yourself up to date on the news of the thread.

terrimerrits is GONE! YAY!!!

OMgosh! Does that mean she's been banned? How does that happen? Her comment hasn't been deleted though.

i have no idea whether she's been banned, or got tired of people telling her the truth and quit; i'm just so relieved and happy that she is gone. no, comments are intact, but her profile is now listed as anonymous, which means she is gone. seen this happen on other social websites before.

we can all breath a sigh of relief now and relax.

Thank goodness!!! How unkind she was!!!

@everyone: thank you so much for your comments and for sharing, it is so incredibly helpful to read about your experiences.

An update: my dad is moving into the Dutch-speaking local nursing home in four days, on Tuesday July 31st. I got the call about a bed available in a Dutch-speaking home the day after i posted here. I keep crying, while driving to work and while telling anyone else about it, but i have to be very honest with myself that it is partly relief that i am feeling as well as grief that it has come to this point. My dad will be all right with my involvement, as he is still able to enjoy other people's company. I had already taken him on a tour there a few weeks ago, and he liked the semi-private rooms, the cozy look of them (it is a really nice place, small but very homy) and that is what we have been offered for him, so he will have company rather than sitting in his room alone. It is a very well supported NH in the community, with very high volunteer involvement, and i am adding myself to that list now as well.
I do already provide him with a "Dutch connection" by taking him to a dutch grocery store in another town, speaking Dutch with him, and having hung up dutch landscape pictures and stocked his bookshelf in his current place with dutch books. He used to go to the library and pick them out, but now he doesn't want to take out new ones when he has so many himself, as he says.
I do think this is the best situation, as i can keep working but spend a lot of time checking on him, and can still take him out and enrich his life while he is supported there 24/7.
I'm glad that someone who was inappropriately critical of nursing homes was confronted in this thread; the last thing we all need is to compound the guilt and grief with someone wagging their finger at us with judgements.
It is true of this, as with so many things, that unless you have experienced someone with Alzheimer's or dementia, it is impossible to know how all-encompassing the demands on our energy and time is. It isn't that i have chosen myself over him, as i used to worry about, but that if he knew what i was thinking about this, he would be the first one to say that i can't take on too much and that i need to have my own life too. He did say that once, last year, and it broke my heart to hear him say it, but it is true.
I'm very grateful that we have a good situation and that his health is good otherwise, and that he isn't suffering. I have to see this as a new adventure for him, and will support him all the way.
Thanks again for your comments and support!
Helma

Thank you for taking the time to share an update. Best of luck to you both on this new adventure. Stop back and drop us a note once in a while ... when new challenges arise, or just to let us know that things are going smoothly.

Helm, I'm so happy for your dad. It sounds like an exciting new adventure for him. Don't be a stranger! I hope, like Jeanne you come back often and share your concerns and just let us know how you both are adjusting. SIGH!!!! I just love this site!!!!!

It has been three days since my dad went into the nursing home, so here is a quick update:

It went extremely well! I spent the entire first day with him, half the second day, and a few hours yesterday.... he is just fine! It is a busy place, and he loves people, so that really helped things along, but in the first hour we had been introduced to one resident and two PSWs who understood and spoke enough Dutch to get by, and that really helped.

So much has happened that i can't think to write it all down, but i'm so happy to be able to say that my role in his life is now to be supportive in only the most positive ways, and his environment and the people around him support him in the ways he needs it most.

It didn't sink in until last night that he wasn't going to see the people in the retirement home he was in anymore, so we have planned to go and visit one morning next week.

This feels so very much better... like how it's supposed to be.

i am so very glad that went well for you Helma! it's so wonderful when things just fall into place and it feels so right for everyone involved. you did a good job with that.

Thank you for sharing! I think your story is more common than we tend to see here. Naturally it is when people are facing difficulties that they tend to turn to a site like this. (As you did when you were in decision-making mode.) We don't see all the success stories of elders who went into a care center and their lives improved. I am so glad that this working out well for you and your dad!

Reading your update made me smile. So glad it worked out well for the both of you. Well done!

Another update: my dad is doing well, as well as he can in the home, but i'm not doing so well right now. I know this is temporary, but i feel like i am suddenly lacking the purpose i had before, even though i see my dad every other day.
I'm going through menopause, have no life because i work afternoons/evenings (in healthcare) and it feels like too much to start anything new right now. I will just ride through this, maybe it's natural to feel depressed after giving up the main caregiving role... i can be "just the daughter" again, a few people have told me, but it's never just that again after having been the sole person responsible for a parent. I have to let go now, more than before, and it isn't easy.
There is probably a better place on this site to say this, but i thought i would continue my own topic here.

To EGLord, JudymW, and whom it may concern.

Caregiver Forum Etiquette
Keep your comments and posts to matters that concern caregiving. Don't discuss controversial topics – such as religion or politics – that might anger other caregivers. Don't use personal attacks, profanity, threats or offensive language. Keep it friendly and helpful!
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Thanks you for understanding!

Karie H.
AgingCare.com Team

Hi Karie, thanks for the information about inappropriate content, good to know!

Another update: I'm adjusting to my new role after having had a meltdown day last week, I guess it was unavoidable. I called in sick for one day, cried my eyes out, rethought my situation and my father's, let things sink in further.

With my work, I come across a lot of wonderful people in their 70s and 80s, and I asked a good friend of mine who is 84, in a wheelchair as is her husband, if she experienced a sense of peace after her parents passed away. She was very much involved in their care at the end of their lives. She told me that there is a great sense of peace when we feel that we did what we could... we really do remember all of the happy times even if things were very difficult at the end, and that she knows that I will get through it when it happens. It was so helpful to hear that from someone who has experienced it already.

My dad is doing well, the nursing home is really an excellent one and I am very thankful for that. They have exercise, sensory programs and music programs daily, and they don't have a shortage of staff, which helps a great deal.

I hope my updates help someone else who is going through something similar. It isn't easy and never will be, but it is most definitely worth it, all of it.