Thursday, September 30, 2010 Jennifer asks

Q: Too soon for nursing home?

My dad is in the middle stages of alzheimers. He talks, walks, smiles, makes jokes, loves playing guitar and singing, but unquestionably gets confused a lot, his speech is obviously impaired, and he started forgetting our names. He also has mood swings, which is expected with this. My mom feels he should go into a nursing home but I strongly disagree. At this particular point I feel he needs assisted living, not at all 24 hr. nursing care. I am at my wit's end trying to convince her otherwise, and feel although she loves him, she doesn't want to deal with this - hence the nursing home at this stage. Am I wrong in wanting him to stay out? She refuses to have him stay with me and my husband and kids, even though we've basically begged.

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Answers (7)

Dorian Martin, Health Guide

2/22/11 12:20pm

Hi, Jennifer,

You may want to explore whether there is a continuing care retirement community in your area. This type of community, which has both assisted living and nursing home facilities, might be a way to get agreement with your mom.

Take care and keep us posted!

Dorian

JenniferCecelia

9/30/10 7:29pm

That is wrong! If you want to be able to spend time with your dad and she wants to send him away why does she care who he stays with? If it is one very close to you like less than 15 minutes away, then I guess. But there are meds that help slow that process. Have you looked into this in great detail?

Jennifer

9/30/10 7:52pm

I have 2 babies at home and she doesn't want to take a chance of anything potentially happening. Even if it's a small chance, she doesn't want me to risk it with the babies. Different people give her different advice ( doctors, social workers, etc. ). My dad had been given an overdose of wellbutrin a few months ago, and as a result acted out in angry ways, which scared my mom for her physical safety. He made comments like " I will hit you if you don't stop " and once shoved her in an airport, into a chair. He has no memory of this at all. My dad normally is a very gentle, sweet person, the direct opposite, but the overdose of meds made him act this way. He is in a psychiatric facility now, has been for a month, de-toxing off the medication he was given too much of. For 3 weeks he hated my mother, inexplicably, was obsessed with her, in a negative way. They have been together nearly 50 years - all each other knows - first loves, etc. He is clearly de-toxed now, loves my mom again, asks what happened, why they haven't spoken in weeks. Mom is afraid to live alone with him, afraid of possible mood swings. I offered, thinking I can handle it, but mom refuses because she doesn't want us to be put in that situation with 2 babies, and god forbid something "bad" happens while my husband is at work - what will I do? That is how she feels. She loves my dad, he's her whole life, but I'm worried he will be put into a facility too soon. He def. needs assisted living, but not nursing home care 24/7. Mom feels his potential to wonder makes him a definite candidate -

Jennifer

9/30/10 7:54pm

JenniferCecelia

10/ 3/10 9:27pm

Sorry for replying so late. I think that given the airport situation for example, and the young children, being in a nursing home that is independent (but has people who check up on them, take them places, et cetera, known as assisted living) called assisted living is a good idea. That is what my mom's mom is in, by choice. However, perhaps this is too independent for your dad, God forbid something happen to him while no one is watching him. God bless and good luck. Stay close to him whatever you do, cherish him still being alive! Make sure the little ones get to see their grandpa enough :) <3

JenniferCecelia

10/ 3/10 9:35pm

It is important that your mother know that it was out of her husband's control. A man who has been happily married to a woman for 50 years does not intentionally hurt his wife, it is not like he wants to do that to her and of course he does not remember, hello Alzheimer's disease :/ (on my dad's side my grandparents got passed their 50th also and I think on my mom's side they did too, both grandpas have passed but I still have both of my grandmas :) congratulations to them for making it to their 50th anniversary!) Again, I think assisted living might be a good idea, but only if his wife visits him frequently when others are around of course so she feels safe and you, your husband, and children come to visit often enough as well (but that is your business). That is what I think would be best. Or you could get your mom a body guard as a nanny for them... but I think the assisted living and what I said above, is a practical and good plan.

mary crippen

2/20/11 10:47am

Hi. My Dad was 88 and in the mid stages of Parkinson's when we had to make a decision about what to do...my brother was on the verge of a nervous breakdown after caring for him for almost 3 years. He had a similar problem with Dad when the Dr. overmedicated him with dopamine...Dad developed extreme anxiety and scared my brother's girlfirend by grabbing her arm and also kept wanting to leave the house to go "home" to the town where he grew up.My older brother who works in a hospital lab finally figured out that that was probably the problem. At one point he ended up in a nursing home for "rehabilitation" but he was again overmedicated and almost died..be very careful of anti-psychotic drugs..I believe what Dad had left of his memory. He was on seroquel and several other drugs, but it appeared that the seroquel had a very detrimental effect. He had a lot of trouble sleeping..basically wouldn't sleep for more than a couple hours at a time...this can take an extreme toll on the family. I think God was watching out for us, because I came upon an intermediate care facility called Hillenvale..a part of a group of intermediate care facilities called Emeritus.

Compared to most nursing homes..it is an exceptionally nicer environment, kind staff, and the residents are kept up and in the living area in a routine througout the day and their rooms are more like a nice hotel room.Physical therapists, occupational therapists, and speech therapists come in with a script from the dr., and they get three meals and three snacks a day. There are several couches in the living area and a big screen tv..it's a very homey place and is secure...the residents either have alzeihmer's, Parkinson's , or dementia..it's called a memory care unit.It's not paid for by medicare, but the cost is around 3,500/mo. a lot less than most nursing homes. My Dad's va benefits covered part of it which was a good thing, because my brother needed to stay in the house for a while.They told me he should be able to stay there for the rest of his life unless he needs a feeding tube.. I'd advise you to make sure there is a medical power of attorney paper signed just in case you need it.

10/ 1/10 8:27am

Dear Jennifer,

I understand this is difficult for your mother. Since she is the main caregiver, she probably knows what she is talking about. First of all, you need to realize that your Dad may endanger others and himself, so with the babies at home, you may not be able to take him in either given his unstabe mood and being in this psychiatric place.

My father-in-law has late stage of Alzheimer's so I know what these elders go through given Alzheimer's. Everyone is different and your Dad seems to have a hard time to deal with it and he gets very anxious and psychotic. My father-in-law has now just moved to an assisted living home for mid-stage or late stage of Alzheimer's. This home is special in that they allow some sort of nusring care (with no feeding tubes but catheter is ok.) He could stay there until the end.

Before he moved, he had stayed home alone for 5 years with home care CNAs (certified nursing aids and caregivers.) It is expensive to pay for 24 hours home care, so this home is more economic. Also he forgot a lot (he forgot his sons in details but he still sort of knows my husband.) We had exhausted all the avenues at home and in the end he was almost dying at home. But after we moved him, he revived again and is eating well again in the new place.

An assisted living home for dementia is a controlled environment so he would not get lost in 24 hours and it is safe 24 hours. There are health care people in the home 24 hours.

I would suggest that you talk to your Mom. The assisted living home may accept him (not the regular assisted living home because he needs a controlled environment.) Note that some asssisted living may not accept him given his moods. Maybe that is why your Mom mentioned nursing home. Well, if no assisted living home accepts him, then the nursing home is an option although the skilled care home is more like an institution/hospital. The assisted living home is like a home with nursing care.

Before you consider moving him to your home, please consider the potential problem. My FIL is a gentleman and never had psychiatric episodes (never went to any psychiatric unit at all.) But it sounds like your Dad has lots of problems emotionally. It is a danger for your family. Unless you can make sure your house can separate your babies from him who might be in a bad mood, and you hire some part-time help (CNAs or caregivers), you would have a hard time to deal with him. Note my FIL looks normal outside so it is tricky that no one realizes he is in late stage. Same thing for your Dad, on the outside, it is tricky and you may think he is OK. But when he gets psychotic in your home, you will have a hard time to deal with it and then you may still need to send him to a nursing home.

Only you and your Mom know your Dad best, so please consider all options before you make a move. Frankly one always wishes to keep the elders at home as much as possible. But you also need to figure out if the private home is really good for him. At times, a nursing home or assisted living home can provide some respite and structure for the sick elders. Of course, there is also a potential that he may blow up in the nursing home and end up dying fast. It all depends on how he copes with it.

Please keep posted and let us know how we can help.

Regards,
Nina

10/ 1/10 9:31am

I also want to add that a good assisteld living home may need a waiting list. We waited 7 months and finally we got the space this July. This kind of thing needs planning.

Sometimes it is the confusion in Alzheimer's patients, it is not about the medications. It is the other way around: the elders with Alzheimer's cannot cope with the confusion and thus the doctor gives him those drugs. My father-in-law has just been given anti-depression drug again yesterday after he stopped taking it in 2007. He took Alzheimer's drugs for a year and half but the doctor stopped it in late 2008 due to too much confusion. Althought he never went to any psychiatric unit, he has had many funny mental blowups. e.g., he wants to die thinking the nurses could kill him or we can kill him with a shot. He insists he wants to work with my husband, but it is never true. He insists on wanting a wife (his wife died in 2004.) He is still asking for impossible things. We are always worried that he may have psychotic reaction and may go to the psychiatric unit one day. We sure hope not.

One thing for sure is to deal with the elders with Alzheimer's needs lots of different skills: distraction or redirection. Never argue with him in his face badly (only gentlely reason with him.) Allow him to do what he wants within reasonable boundary. They have sundowning so at sunset, you need to turn on the light in the house. Give them something to do... The hardest part is how the family copes given these special techniques. I have to say the in home care agency we had hired helped us a lot because the home care nurse knew about Alzheimer's, not that we agreed with one another totally.

Alzheimer's is a tricky disease and it is hard. Don't assume the problems can be easily resolved. Just because they stopped the drug, it does not mean your Dad will not blow up again.

Take care,

Nina

10/ 2/10 1:16pm

Hi Jennifer,

I realized you are talking about putting your Dad in your house as a private home with your assistance. I think if you plan well with many helps, it could be done. But you need to be aware that at times, when he gets confuse, he may take up your baby and walk out and get lost due to confusion. So you need to have a babysitters or caregivers (for both babies and your Dad) at the same time. Since you have no idea when your Dad will act up, someone else has to help you. Your husband needs to handle the babies or your Dad depending on the situation. You cannot expect to do this without your husband's help. If you are home with the babies and your Dad, it is too much. Now he could be at home alone but sometimes he would go to the neighborhood and causes panic among the neighbors and they could call the police for help.

Unless you get all the manpower and help, you need to realize this is not a simple task. Your Mom could not handle him does not mean that you can do better. Also in the beginning, you may be the caregiver as his daughter. As time goes on and he gets sicker in later stage, he would also mistake you as his wife and causes more problems. He may want you to do the things your Mom did as a lover. I don't know if your Mom and you are in the same state, but you will have to consider all possiblities.

I hope your Dad will not need psychiatric unit anymore.

Take care,

Nina

Carol Bradley Bursack, Health Guide

10/ 4/10 7:28am

Hi Jennifer,

Nina has just been through this and has some very good advice for you. As much as you love your dad, your mother has a point, but assisted living - with a memory unit so he stays safe, since you never know when he could start to wander - seems like a good idea. And, as Nina says, many good ones (nursing homes, too) have long waiting lists.

Also, once your dad moves in with you, if it doesn't work out, you could have a real battle with moving him out and then you will really feel horrible. Assisted living seems to make sense, so he has the most independence he can have, but everyone stays safe. Can you imagine how terrible he would feel if he hurt one of your children? He wouldn't want that if he could be logical. Please consider a middle option, since you want him in your home and your mom wants him in a nursing home. She's living with him, so she knows him. She may not be aware of any option but a nursing home.

Good luck with this. You need your brain as well as your heart to cope with this tragic disease.

Carol

10/ 4/10 9:08am

Carol got a point. I also forgot to mention that these kinds of elders cannot be moved frequently. Each move to a different environment will cause him stress and effort to get adjusted. So the move should be as less as possible. Sometimes if you have to move him, it is OK, but try to avoid the times of moves. If you have to move him again from your home, it will be quite difficult and emotional.

Take care,
Nina

Jennifer

10/ 4/10 1:53pm

Thank you everyone for your input. The problem now is mom is refusing to put him anywhere but a nursing home. So, he has been 100% de-toxed off the overdose he had been given of wellbutrin ( which caused the awful moods - no fault of his own - the psychiatrist he was seeing did this - and everyone agrees it was a massive error in judgment, to up someone's meds so much - so quickly), and is still in the psychiatric facility because mom doesn't want him coming to stay with us. Mom is living with us now, so it wouldn't be just me, it would be me, her and my husband. He goes to work, but we could work out a schedule so some days I am with my dad and my mom watches my kids, and vice versa. Everything would be on a schedule, just like I have with my kids everyday. I can take him to a local senior center, day trips, movies, etc. and mom can visit friends he wants to see when it's "her" days. But, mom refuses. Mom repeatidly refuses to even discuss this. She wants him going directly into a nursing home. Not into assisted living, not to even try it first, when it's obvious a nursing home at this stage makes no sense. He will definitely need one, just not right now, so why on earth do that to someone? I find that awful. That is what is killing me. To not even try assisted living at all? Why? My father walks, talks, gets dressed, showers, makes jokes all the time, and his huge fault was a psychiatrist tripled his dosage of wellbutrin which caused him to become psychotic. The dr. at the clinic said that is the reason he behaved that way. He was put into a facility/clinic to de-tox off it - which he has. He should be gone by now! The longer he stays in a psychiatric unit for the "crime" of having alzheimers - the longer he will adjust and I fear become much worse much faster, due to his surroundings. I think mom was so traumatized by how he was behaving when he was psychotic, due to the overdose, that even though he is de-toxed completely - she does not want to risk it - even though he's not on the medication anymore! I visit a lot. I even come with my kids ( they are 1 and 2 and don't realize what is going on - they just love seeing grandpa and he adores them ), we stand by a side window so he can see them, and I take turns with mom going in to visit him, as one of us watches the kids. I know this email sounds nutty - but the combo. of not letting him stay with us - and then not even TRYING assisted living - just straight to a nursing home once he leaves this place - I find that aspect awful. 80% of people with alzheimers, esp. in my dad's stage - the middle - not the end - the middle - live with family. I am his daughter, I love him, my husband and I want to help - we want to - and mom is refusing. We have limited financial resources - but we can provide a loving home, understanding, we will do anything it takes to adjust to his lifestyle - learn anything necessary to make it easier for him - and we know this would be temporary, of course - but at least give it a chance. Let him have some happiness before mom carts him into a nursing home prematurely. Usually you have situations where someone does NOT want to help - but we do. At my wit's end. What further upsets me is my friend's father has alzheimers, as well, but he's wheelchair bound, totally immobile, can't do anything for himself, and he was just put into ASSISTED LIVING 2 weeks ago ( he also had a stroke ). My dad is nothing like that - and he goes to a nursing home right away? HUH?

10/ 4/10 2:19pm

Hi Jennifer, Thanks for responding to my replies. It seems indeed he could be living at home or goes to an assisted living home. I mean, he can even take a shower! later on, he would not want to touch water or get a shower!! Since no one really knows how long the process of going downhill will take, being at home certainly is possible. But since your Mom has the scare, maybe you can ask the nursing home to do some evaluation first and they will tell you if it is too soon for him. e.g., for some assisted living home for mid-stage AD will say early Alzheimer's is too early. But perhaps you can ask the nursing home or assisted living home's administration people to explain the difference to your Mom and make her see the light.

Also, you need to get your Dad out of this psychiatric facility ASAP!! From what I have known from other cases in this site and others, the elders with AD will suffer more in the psychiatric facility due to medications and cold confusion/environment. Unlike the assisted living home or even nursing home, the mental hospital like any hospital does not provide any memory support or recreation programs. It is a no no, even a nursing home is better.

Maybe you can get him to go to a nursing home first to get him out of this mental facility and then you guys can decide what to do permanently or more permanently.

Ask some professionals to talk to your Mom and explain to her the different options. A social worker can help too.

Take care,

Nina

Jennifer

10/ 4/10 2:26pm

Hi Nina. We desperately want my dad out of this psychiatric facility but my mother doesn't because she doesn't want him coming back to stay with us ( and her ), even temporarily. It is at the point where I wrote my dad's doctor ( the head psychiatrist within the facility ) a note, saying my husband and I are more than willing to help and it seems our main obsticle is my mom. I can't believe I did this, mom and I have always been so close, but this is how strongly I feel about this being wrong. I told the dr. to please call me. If I don't hear from him by tomorrow I will call. I must meet with him. If this man can give me one reason why my dad is still in this facility aside from my mom saying he has no other place to go ( which isn't true - we want him to come to us ), then I want him to be released. It's not as if I will just let him fend for himself. We will plan a schedule, like I said before. I feel for whatever reason mom is not thinking correctly about this - even though I know she loves him. They've been together nearly 50 years, high school sweethearts. Either she genuienly feels she is doing what is best for him - or is not admitting to herself that she doesn't want to deal with this at all.

10/ 4/10 2:35pm

Hi Jennifer,

Sometimes your Mom may have problems. How old are your parents? Your Mom may have her own medical problems or even some dementia as you never know. Maybe she has other issues like mental issues. Not that it is her fault or anything. Who is your Dad's Power Of Attorney for health or guardian? This will take longer time, but if you get the guardian for your Dad instead your Mom as his POA, you can do whatever you want about your Dad, but it certainly would hurt your Mom.

I am sorry you have to deal with this. Please try to talk to the professionals such as social workers or attorney or health care professionals to see how you can help them out.

Regards,
Nina

10/ 4/10 2:42pm

The thing is medicare A/B allows the elder to be transferred from the hospital directly to a nursing home with a short period of paying with medicare (5 months or less.) Perhpas your Mom is thinking of this option (if he is in the hospital more than 4 days.)

Anyway, once the doctor says OK, get him to anywehre for now in order to avoid a fight with your Mom directly. One elder's trouble is enough...

Good luck,
Nina

Jennifer

10/ 4/10 2:58pm

Hi again. My mom doesn't have any medical problems at all. Infact, she's in fabulous physical shape. Mom is in her 60's, so is dad. She looks half her age, infact. Emotionally, though, there is no question she is depressed about dad. Who wouldn't be? We all are. Dad definitely will need a nursing home, but I strongly feel it shouldn't be now. I am going to call the director of the clinic dad is currently at ( I already left him a note but haven't gotten a call yet ) and ask for him to meet with us (mom and I ) so we can both voice our views. I can't imagine mom would say no to this. If she is so sure dad belongs in a nursing home directly the clinic, there should be no issue in talking to the social worker there or the director, to see his professional opinion. I love my mother very much, and I adore my father more than words can say. We've always been such a close family - and I hate being so angry at my mom. I just feel what she is doing is wrong, but it's so hard to believe she views it that way. Thank you for your advice - and taking the time to read my novel's length emails.

Jennifer

10/ 4/10 3:02pm

P.S. Nina: money is a huge factor in this. He can be transferred directly from the facility he's in to a nursing home with medicare. But......even though it's very hard to find a place in new jersey to accept medicare, there are a few places, and many more in new york that would. Months ago mom said there is a beautiful facility in Princeton, NJ that shockingly accept medicaid. But, all of a sudden she isn't even attempting to put him there. JUST a nursing home. I am stopping with the emails for now. I could go nuts myself talking about this! I just want what is best for my dad, who was always a wonderful father to me, and I feel just sitting back and not doing anything would be wrong. I have to try for him. He deserves it, to say the least. Thanks again for reading my rantings.....you are wonderful.

10/ 4/10 3:27pm

Hi, thanks for the reply.

One thing is certain: if your Mom is afraid of him (sounds like that now,) you cannot really make her see the way you see things. Perhaps if she could, could she stay away a little bit while you get your Dad home? (If this works out this way.) I can see that the living arrangement may be difficult. Maybe she can stay with your other relatives for a while until your Dad settles down in your home. You cannot force her to deal with him right away esp. after she was badly hurtly by him mentally.

Just my 2 cents,

Nina

Sherry N.

10/26/10 10:20pm

My father too has mid stage alzheimers and I have been in your shoes up until last month, when the disease became too much for my mom to handle, and she had a heart attack and is now gone. She had repeatedly mentioned to me that he was getting too much for her, and wanted him to be put in a nursing home. They were married 61 years, and I didn't feel he was ready for that. I attempted to request home health care and/or assisted living, but she wouldn't have anything to do with that. It seemed it was all or nothing, and one of the last things she said to me was it was him or her. I now live with so much guilt, torment and unanswered questions. In that past month my father went from a nursing home (where she put him), to an assisted living (where I put him and I love, but they want him to leave due to too much wandering in other rooms), and now am considering either home care or a nursing home again. I am all alone in this mess, and between raising a daughter, taking care of two homes now, working full time and dealing with a declining father, I'm about ready to go insane. My advice would be to listen to your mother. She lives with him and knows him better than anyone. You may be mad at her for what she chooses to do, but I have now walked in my mother's shoes and regret not having her around anymore and maybe not completely understanding what she was going through. My prayers are with you and your family.

Q: Too soon for nursing home?

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