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Should I put my husband in respite care
Peg70
Posted: Monday, January 28, 2013 6:11 PM
Joined: 5/14/2012
Posts: 492


My husband has had alz. for about 8 1/2 years and is getting quite bad. I promised him I would never put him into a nursing home as long as I was able to keep him at home. I still don't feel he needs to be in a nursing home and I am able to take care of him, but I feel like I need a break from him. We live way out in the country and don't have any close neighbors, all our friends live a few hundred miles from us and relative in different States, so I am pretty much alone taking care of everything, including husband. My doctor has put me on anit-depressents, but I still can't seem to get myself together. I have checked into jputting him in respite care for a week, but don't know if I can do it. I don't know how he would handle it, and I'm not sure if I can handle him not being here and the mental strain of knowing that I would only be putting him someplace he doesn't want to be, just to have a few days to myself. I am already starting to feel bad and I haven't even decided for sure  what I am going to do. Anyone have any ideas or thoughts that can help me make up my mind what to do.  Peg
Henry,s daughter
Posted: Monday, January 28, 2013 6:45 PM
Joined: 5/17/2012
Posts: 494


Hi Peg, 

Just my 2 cents, I am my Dad's caretaker, but I just love the postings that go on it the spouse' s board - so I eves  drop something  terrible! 

I am sure other spouses  will answer you in short order. Based on what you have shared with your support system and location, you NEED to take care of you. If you get total burnout and it does happen, what will happen to your husband?

Blessings your way!

Sue

 

 


socwkr
Posted: Monday, January 28, 2013 6:46 PM
Joined: 10/6/2012
Posts: 923


Peg70, I can only speak from my personal experiences so I say...do it!   Remember when the flight attendant tells us to put the oxygen on ourselves first so we can help out others?  It's the same; we need to take care of ourselves.

 

Respite is good for two reasons...it gives us a break but it also can prepare us for the possibility of a nursing home placement.  I always thought that I was the very best caregiver for my husband but found out that I was wrong.  It reminded me of when my daughter went off to school for the first time.  I was a nervous wreck but she just waved, said "bye mom" and off she went. She was surrounded by people who cared about her and wanted her to do well.  It's the same for my husband.  There are some wonderful facilities out there with amazing people who really care. 

 

Your husband will be in good hands.  You'll get sleep, you'll eat well, and you'll be able to do something fun.  There is a personal rule that I told my daughter:  my husband-her dad was very unlucky and it's extremely sad that he has Alzheimer's but I'll be damned if Alzheimer's is going to take down another two people.


SunnyCA
Posted: Monday, January 28, 2013 8:09 PM
Joined: 2/14/2012
Posts: 1752


Heck, yes, give it a try.  Tell him it's a fancy hotel or spa or something, and he's going on vacation, if you think it might bother him.

 

But ... be prepared.  You might discover he loves it.  Lots of our ADLOs thrive when placed.

 

Ditto everything the others said (including the -- gasp!!! -- eavesdropping daughter).


Peg70
Posted: Monday, January 28, 2013 8:51 PM
Joined: 5/14/2012
Posts: 492


Thank all of you for your encouragement. I cried when I read your reply (socwkr), and I know you are right, but I not only feel I will hurt Rich, I feel like I am a failure, that I am failing him and somehow I am failing myself. I should be able to do this, should be able to take care of him without thinking about myself. I don't even know what I would do with the time, what I want to do, if anything. Again thanks to all of you, it helps just knowing someone cares. I will let you all know what I do, and how it turns out. Thanks again and lots of love to all of you. Peg
Tomc5592
Posted: Monday, January 28, 2013 8:53 PM
Joined: 11/17/2012
Posts: 1203


I hope you'll get out of town, a change in scenery can do wonders.
socwkr
Posted: Monday, January 28, 2013 9:22 PM
Joined: 10/6/2012
Posts: 923


Peg70, may I add something else..something that I recently learned at an Alzheimer's program for caregivers.  We talked about our marriage vows and how we promised to always love our spouse/partner.  We discussed our feelings about not always being the best for our loved one, feeling guilty for even thinking about respite, being exhausted on a daily basis, but also knowing that we wanted to continue caring for our spouse.

 

The social worker reminded us why we got married in the first place.  The love we share, building a family, buying a home, being there to support each other through all of life's ups and downs.  She said that this didn't need to include feeding them, wiping their butts, giving them medication.  There are people who are experts in this area, they went to school for it, and they get paid for it because it's their jobs.  She recommended that we allow these people to do their jobs for our loved ones so that we can continue loving our spouses.

 

I am sad to say that this is my second week with my husband in a nursing home.  It finally had to get to that point.  And guess what...just like SunnyCA said...be prepared because I discovered that my husband loves it.   He's relaxed, he's well fed, he's entertained.  It's significantly better than the 24/7 care that both my daughter and I were providing him.  I visit him every day and get to love him, not spend my time arguing with him over his incontinence and going to the commode.

 

I think that it's great you are exploring options and wish you the very best!  I find that respite is something that we approach with baby steps.


Iris L.
Posted: Monday, January 28, 2013 9:59 PM
Joined: 12/15/2011
Posts: 13094


Peg70 wrote:
I not only feel I will hurt Rich, I feel like I am a failure, that I am failing him and somehow I am failing myself. I should be able to do this, should be able to take care of him without thinking about myself.


Peg, these are words of an overstressed caregiver.  Your husband would be distressed to hear you talk like this.  You're doing a great job out there in the country.  Please get some respite!  You will both be better for it.

P.S.  Antidepressants will not overcome physical burnout.



Iris L.


SuzF
Posted: Thursday, March 14, 2013 12:15 PM
Joined: 3/14/2013
Posts: 3


Peg70,

 

I am wondering the same thing right now.  Did you use respite care and if so, how did it go?

 

Thanks!


Doug Wonder
Posted: Friday, March 22, 2013 8:32 AM
Joined: 1/24/2012
Posts: 10


Hi Peg70,

I hope you read this and let us know if the respite care worked. I just put my dear wife into a memory care unit after 6 years of dealing with this terrible disease. She is just finishing her first week there. They have activities for them to do, puzzles, trivia,exercise,bingo,singing, etc. Before this she was just sitting at home while I went about chores and tried to squeeze in activities for me that I could take her along with. I had quit playing golf, bike riding, and all of the activities that kept me healthy and active.

The biggest problem that I have now is for me adjusting to not having her here. The facility is only 5 minutes from where I live. The nurses and the pros there told me that it takes about 60-90 days for them to adjust to the new environment. I go over a couple of times a day. She is happy and engaged when I observe her without her knowing that I am there. I have made the mistake( I think) of being there at night and she gets upset when I try to leave, or if I take her out and bring her back she doesn't want me to leave. This is an adjustment and when I look at the situation without my emotions I know that she is in the best environment that will give her a better quality of life for the number of years that she has left. (did I mention that she has a studio apartment and is there full time) I get so sad without her and miss her terribly. I pray every night that she is happy there and that I am doing the right thing for her.

I would like to hear from others that have placed their LO's either in Respite care or full time in a memory care unit.

God Bless you, Peg


SunnyCA
Posted: Friday, March 22, 2013 11:00 AM
Joined: 2/14/2012
Posts: 1752


Hi, Doug.  I did not have to place my husband (and thank heaven for that...)  But I can pass along a tip I've read:  Time your visits so that you leave just before an activity your wife enjoys, or just before a meal.  Ask the staff with help in distracting her, getting her ready for whatever she's going to do.  She's much less likely to even notice you're leaving.

 

((((hugs))))


GGSA
Posted: Sunday, March 24, 2013 8:13 AM
Joined: 12/8/2011
Posts: 11


Some helpful comments here. In another discussion group (Respite Advice) I wrote that this was a big issue for me. My wife is 85 and I am 87 and am her sole caregiver.I am now slated for cataract surgery and was concerned that if I had problems I might not be able to look after her needs too. After long arguments between my head and my heart I decided that we would both go to respite care. We will have separate rooms. I will go for a few days pre-op and post-op and she will stay for a couple of weeks. I don't have to go but if I don't go she won't go. The comment below from another contributor was effective.

 

 

"Sometimes you need to listen to your heart and sometimes you need to listen to your head.  If you've been taking care of your wife for 3 years without a respite you need to listen to what your head (and doctor) is telling you - you need to take a well-deserved break.  What would happen to your wife if you got sick because you refused to take care of your needs?  For both your sake, take a break.  She knows you love her - you've more than proved it."

 

catlady
Posted: Sunday, March 24, 2013 8:59 AM
Joined: 9/12/2012
Posts: 1267


Peg,

A couple of weeks ago I took a 2-day respite from my DH.  I had his brother come in and take care of him for two days and nights so I could get a little break.  It was good for my and I learned much.  I was very hesitant as the time grew closer for the event.  My DH and I have rarely spent a night apart from each other.  I learned that someone else could take care of him.  I was only 5 minutes away so that if my BIL felt overwhelmed, I could be there to take over.  Well, he did not get overwhelmed.  Now, I'm hoping to go visit my brother who I haven't seen for 7 years.  I think I can do this without the guilt and fear that I had with my first respite.

 

I think that nursing home promise is one you may not be able to keep.  I know there are many who made the same promise to their parents and spouses but I don't think our loved ones would want us to sacrifice our own health, too.  Also, I'd rather have the luxury of checking out different places on my terms instead of having to do so in an emergency situation. 

 

Try a short respite and see how you both do.  I agree that when the time comes when I feel I cannot take care of my DH, I want the professional to take over so I can focus on loving the man I married. 

 

Let us know what you decide.


socwkr
Posted: Sunday, March 24, 2013 10:20 AM
Joined: 10/6/2012
Posts: 923


Doug, hi.  My 67 year old husband is in a nursing home since January.  I live approximately ten minutes away from the facility.  The social worker did advise us that it takes about 3 months for both of us to adjust.  I found that when I have a routine with my husband that we both do so much better.  He's got physical therapy and other sensory activities during the day so I arrive around 4 pm.  We chat for a while in the rotunda, I bring some cheese and crackers from home, and he tells me (in gibberish and totally fictional stuff) what he did during the day.  I then take him to his room for a little quiet and I feed him dinner.  I shave him because he finds that relaxing and put some lotion on his hands.  I take him for a little walk, it's really just shuffling where he takes about 20 steps, but it's a good opportunity to get a real hug from him.  Around 5:45, I tell him that I will be leaving in about 15 minutes.  He has some coffee and a few cookies and then it's time for me to go.  I tell him that I love him and that I'll be back.  I have to promise him a few times that I'll be back and he's okay with that now.  I still cry a lot because I wish that he could be here with me but he's got much, much better care in the nursing home so I have to do this for him, not for me.

 

And Peg70 has some really good advice.  When your wife is in the facility, you can spend all your time loving her.  When my husband was home, I was doing it all, some of it not very well. 


Twife
Posted: Sunday, March 24, 2013 2:53 PM
Joined: 10/7/2012
Posts: 90


Doug,

 

  i placed my husband (38 years of marriage) in a dementia unit a year ago. We had two incidents which made me realize we were not safe. I had been reseaching places and preparing our homefor selling... thinking there might be a time in future. My husband said he never wanted to be in nuring home.   and i had answered I would take care of him as long as possible.  He has early onset as had to retire from executive job in 2000.  So i took care of him for quite a while as he slowly declined.  There are no words for the pain of watching a brilliant man loose his treasured abilities.

  After he went into what is an absolutely wonderful dementia unit - i pu tour home for sale. It sold in less than two weeks - so i bought a villa near as possible to him. I go every day for lunch (his sister(s) go once a week to give me a respite. He needs help eating  and most other tasks but is still able to walk (unsteady) . He does not know me but is happy to see me and smiles and often hugs me. He does know I am a caring person.

  I wanted to say that I was shocked when he entered the facility as he has never once asked to go home or even where he is...he is pleased when he returns to his room as it is familiar to him.

 i consider that our situation is the best it could possibly be as he is safe, happy, engaged when he wants to be and very well cared for by the nurses.  He has actually improved in some ways...i think it is combination due to all Doctoring is done at facility so he does not have to go out, the best medicine regulation, stimulating activities at his level and choice, and physical therapy activites. He did go on Axona (coconut oil drug) shortly after arriving there.


Twife
Posted: Sunday, March 24, 2013 2:55 PM
Joined: 10/7/2012
Posts: 90


wow we are in same boat but my husband is 71 and i am 61.  Very sad to slowly and slower lose such a great man to this horrible disease.
VA P
Posted: Wednesday, February 24, 2016 5:07 PM
Joined: 11/9/2015
Posts: 1


Hello,

My hubby is 79 and I am 62, still working full time.  Hubby is in his 5th year of vascular dementia.  Mid December he fell when with a friend, breaking his hip - hip replacement surgery the following day. The drugs for the surgery made his brain/memory worse, but he still knows me.

 He still has not walked, he used to walk with a cane.  After the hospital and re-hab for 3 weeks, I had to transfer him to a "board and care" home, as I was told by the social worker that he needs full time care.  Several people suggested hospice, but I don't think he is that bad.

 He has had complications such as pneumonia, and tells me every day that he wants to come home.  I drive 10 miles, and visit with him 2 1/2 hours each afternoon/evening and eat my dinner while he eats his.  

 He was very stressful to me before mid December with Sundowner's syndrome, not getting to the bathroom in time (wears diapers now), anger and confusion.   I don't think he will get well enough to come home, but if he does, I am not sure I can handle it.

The cost of a caregiver 16 hours per day will cost almost the same as the rent where he lives now.  If his retirement fund runs out, mine is next.  That stresses me out more than his condition.

He is fairly happy were he is now, and gets more care (2 young ladies that lift him, cook and such) that he would even have at home.


Bjblyghtnin
Posted: Thursday, February 25, 2016 1:19 AM
Joined: 7/9/2013
Posts: 3012


You should start a new thread where more will see it and respond.

Welcome to your new family of caregivers.  

It sounds like he is where he should and needs to be.  Our spouses always want to go home, but don't know what is best for them.  Ask an eldercare attorney or the home where he is about applying for Medicaid.  You shouldn't have to go into your own retirement.  The laws are different in each state.  An eldercare attorney is your best bet.  Come back often let us know how you are.

Bonnie 


TayB4
Posted: Thursday, February 25, 2016 8:44 AM
Joined: 8/8/2014
Posts: 524


I will second what Bonnie says about seeing an elder care attorney.  You should not have to use your retirement funds.  When your husband's funds run out, he may be eligible for Medicaid.  An eldercare attorney can advise you on this.
Jo C.
Posted: Thursday, February 25, 2016 9:58 AM
Joined: 12/9/2011
Posts: 7124


Welcome to you.   There is some excellent advice on this thread even though it is an old one from 2013; the principles are still the same.

Bonnie has given excellent advice regarding NOT accessing your own retirement for your husband's care.   You need not impoverish yourself.   In most states, the state will permit each at home spouse to retain a significant amount of funds and also one does not have to spend one's own retirement funds or pension to obtain long term care for a Loved One (LO). 

The Alzheimer's Assn. has a Helpline at (800) 272-3900.   If you call; please ask to speak to a Care Consultant.   Consultants are highly educated Social Workers who specialize in dementia and the dynamics surrounding that diagnosis.   They are very supportive, can provide information and also provide contact numbers for helping entities within your community and can in all probability put you in touch with a contact number for assistance with Medicaid Long Term Care information.  There is no fee for this assistance.

In our state, the at-home spouse can keep up to $109,00 in savings and one's own retirement accounts such as an IRA and 401k, etc., and one's own social security income and any pension as well as any inheritance that comes after qualifying for Medicaid, and can keep ones own house and car.  

The intent is to not impoverish the at-home spouse.   Though our LOs must pay their Social Security income as a "Share of Cost" for their care; if the at-home spouses income is low at a certain pre-set point, the at-home spouse can receive a waiver to keep all or part of their LOs social security or other income.

I send best wishes to you and hope that you are able to find assistance,

J.

 


walklil
Posted: Wednesday, March 9, 2016 11:42 PM
Joined: 3/2/2016
Posts: 4


I put my husband in respit care for two weeks and it was a relief for both of us.  I realized, too, that all the obstacles and fighting would just be still there when he went home; so, together, we made the decision on "long term care".  Yes, the people who work with him are trained, caring, professionls and he is happy.  Before, he spent most of his days in solitude; and now he visits and enjoys with those around him...and so do I.  Definetly give yourself a break and try it.
Needing Support
Posted: Thursday, March 10, 2016 12:13 AM
Joined: 2/17/2014
Posts: 101


Hi Peg 70!

You need to take care of YOU first and foremost or how can you take care of your husband? Being a caregiver for over 4 years for my husband, I  got worn out and burned out!

Respites are an "excellent" idea to give you a break and to "test" the home for LTC.  When I put Jim in a respite, I found that a week Respite was the best!  I tried long weekends, but by the time you spending moving your loved one in and out of a care home and then in a couple more days moving him back home again, I believe defeats the purpose of a Respite...too much work and too little time to relax, unless the Respite is for at least 1 week.

In a week's time, I not only got some rest, but was able to make a decision if the care  home would meet my husband's needs for LTC.

I wish you the best in finding a care home for a Respite!

Hugs!

Needing Support

 

 

 

 


GLR
Posted: Wednesday, April 27, 2016 4:00 PM
Joined: 4/27/2016
Posts: 1


How do I know when it's the right time to put my dad in a memory care facility?

My parents live together in an independent living facility. They have been married for 60 years and have always had a strong, loving relationship. However, my dad has Alzheimer's and it is steadily worsening. He becomes agitated easily; has a bit of paranoia; and doesn't always trust what my mom, my siblings, and I say even though we tell him the truth and try to provide him with the most loving care possible. It's getting to where he sometimes yells at my mom when she reminds him to put on a clean shirt or walk the dog. She's rather frail and in a wheelchair and she is easily upset when he yells at her. One of my sisters or I have to go over to our folks' apartment every day to deal with Alzheimer's issues or to take our parents to doctor appointments, which we're happy to do but it is trying at times.

Dad doesn't remember why he can no longer drive. He often thinks he still lives at their old house and that they are just "visiting" the independent living facility temporarily. When I explain these things to him he becomes angry and said that nobody told him these things. He often thinks we've ganged up on him and that we're plotting against him behind his back. Sometimes he's totally irrational but other times the "Alzheimer's fog" lifts and my dad is there like his "old" self and you can carry on an intelligent conversation with him. You just never know what you're going to get though. In a social situation he's still very pleasant. They go to church and they also eat dinner with others in the dining room each night at their facility. That should give you a picture of my parents' daily lives. 

So how do I know when we've reached the time to place my Dad in a facility? I know the current situation of dealing 24x7 with a spouse who's irrational and erratic wears on my Mom. I like the idea of moving him somewhere that he's safe and cared for but there's enough of his mind left that he would be aware of what we're doing and he would feel angry and betrayed. He would not go willingly. I'm just not sure how to weigh my options here and do what's best for everyone. At this point I think Dad would never forgive us if we moved him but I think my Mom's nearly ready to do it. She tells us she is. But would she get over having to do that to her husband. And is it worth damaging my relationship with my dad to move him? Should I just wait until he's totally incoherent before I move him?

Sorry for all the questions. I'm just a bit overwhelmed and trying to figure out how to provide care while still holding down a full time job, maintain my marriage, and raise three kids. I appreciate any ideas or insight.

Thanks!


cmcm
Posted: Wednesday, April 27, 2016 5:00 PM
Joined: 3/6/2013
Posts: 35


Welcome GLR.

I reposted your post on a separate thread of its own so it would get more views and hopefully more replies.  This is an old thread from Peg70.  Sadly, her husband recently passed.

Feel free to also post on the Caregiver Forum.  Most caregivers for parents post there and will also understand what you are going through.

Again, welcome.

 

 


Gig Harbor
Posted: Wednesday, April 27, 2016 6:11 PM
Joined: 3/10/2016
Posts: 193


Put yourself in your dad's place. Would you want to put your spouse and children thru what you and your mom are going thru? I know I wouldn't. I truly feel,that there is a time when it makes sense to move to the next level. He will adjust. It might take awhile but it will happen. If he was totally of a normal mind he would probably be horrified to see what he is doing to his wife and kids. In a perfect world he would be able to stay with your mom until he dies but it is not a perfect world. You are not bad people for not letting one persons behavior ruin the lives of the others involved. This might not be a popular post but it is the way I feel and I have made sure my kids know.
My Sweet Dog
Posted: Friday, April 29, 2016 11:39 AM
Joined: 6/23/2015
Posts: 37


Hi Peg-I understand how hard this is for you-My DH has had dementia for a little over 4 years-just recently he has been placed in a Memory Care facility & I miss him everyday.  If you really think about how hard your situation is & how very hard you have been trying to handle EVERYTHING-your DH would NOT want you to go through this, if he was thinking rationally.  Do take the help of respite-& please DO NOT feel guilty for doing this.  This is such a horrid disease for the person who is suffering with it & the family members who go through this journey along with their loved one.  Your journey will continue to get harder, so please take advantage of any help you can get along the way-God bless us all, as we struggle to understand why us!!
C.G.
Posted: Friday, October 21, 2016 7:57 PM
Joined: 10/21/2016
Posts: 3


The thought of placing my husband in respite care really makes me sad, and we are not at that stage, so it is easier for me to comment than if I was facing such a place.  Having said that, I am part of a caregivers group in our area and found that the people that were willing to see possibilities in getting a reprieve seemed to weather their caregiving so much more.  It is hard to remove the emotions from such a situation but doing something that is right for you can also be helpful and right for the one you are caring for. You will be refreshed and gain strength from a reprieve.  

I am trying to find places for my husband now, for a reprieve,  so when I have to face those challenges, I will be able to take that step. If you don't take care of yourself, how can you take care of your loved one?  I think facing the sadness that comes with getting to that stage can be overwhelming, but staying in a bad place with your situation can be more disabling.  

I wish you the strength to make the decision.


C.G.
Posted: Friday, October 21, 2016 7:59 PM
Joined: 10/21/2016
Posts: 3


You are filled with good advice.  Your husband has a wonderful caregiver!
C.G.
Posted: Friday, October 21, 2016 8:14 PM
Joined: 10/21/2016
Posts: 3


It is so easy to get bogged down with how making hard decisions make us feel but the fact of the matter is - we have to make the right ones for those we are taking care of and that includes taking care of ourselves as well. They are not the same person we married and we have to find ways to adjust our ideas and ways to insure their care, as well as our own.  It does not diminish our wedding vows, in fact, it is the very best we can do for them.  You will ensure his best care!  The thing I say to most people is - if you could remove the emotions from the situation, what would be the best decision?  That is always the right decision.  If you saw someone else in the same situation what would you tell them?  More than likely if you knew someone who was so exhausted you would know that it would be a win win situation for them to put their loved one in respite care as well as having a reprieve themself.
 
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