Is anyone taking care of a spouse?

[Futurehope]

Hi

I am new to this sight. I have been caregiver to my husband for the last three years and recently had to quit my job and become a full-time caregiver because he can't be alone anymore. He has dementia and Parkinson's and gets lost in our home.It has been a big adjustment because my husband gets so confused with everything and I have to take care of absolutely everything. I feel alone most of the time even though he is here. Unless you are in this situation no-one else understands. Talking with other caregivers is important because we understand the hi's and lo's of our days.

Good Luck and God Bless each of you!

Mary

[ab5041]

Pam - Girlfriend - I'm in the same situation.  My husband went from a funny, kind, wonderful man to a mean and selfish piece of  *^ %!.  I work full time and come home to be his slave.  Hang in there.

Consider yourself hugged and hugged.  You're worth 10,000 pieces of gold.

[gm72043466]

Hi, Everyone, this is also my first time on this sight. Your individual stories were not only interesting to me , but comforting just to know that I' m not alone. My story is a little different,in that my husband has a vascular dementia, but like the two of you, I have to take care of everything and although I'm a positive person, I often feel depressed because I never thought I'd be in this kind of situation.

[jo6115]

I'm also new to this site and my husband has vascular dementia and other health issues.  I'm also physically disabled.  Our son who is 29 and lives with us has autism and schizoaffective disorder and is disabled.  A lot of caregiving for a person with multiple health problems to handle.  I have POA for my husband; conservatorship for our son.  For most of our 39 years of marriage (I'm 60, he's 65) he handled the money--insisted on it.  He can't now and it's not easy for me to pick it up after all these years of his doing it his way.  I'll be consulting a lawyer specializing in elder law and special needs law soon.  I have to take steps to protect our house, etc. in the face of what will be increasing care costs when we have to bring in help, and to secure a future for our son.  As someone mentioned, the longer chronic, disabling to one degree or another, disease continues, the more isolated we become.  By the nature of our disabilities there are tight limits on what we can do and people just fall away when that's true.  They have no clue how to handle it.  Multiplied by 3 for us. Glad to have found you!

[eb572]

I have been taking care of my spouse for several years now and it is a very lonely and isolating world.  People will offer to help but then when you ask they are "too busy."  We have lost friends and family because the longer the illness drags on the less people want to spend any time with you.  I sometimes wonder if it would be easier to get a divorce and let him become a ward of the court.  He has the opportunity to work on getting better but doesn't do it.  It is so frustrating and aggravating that I can't continue to deal with it.  I lost my sister 6 years ago to cancer and my mother is in a nursing home.  My main support system is gone.  

[jm62145317]

Hi!  I am taking care of my spouse.  We will be married 60 years in 2 days.  My husband has had 2 strokes and a seizure since April of 2014.  His personality has changed and I understand this can happen after a stroke.  Like I just read in the comment above mine--your husband has an opportunity to get help, but won't do it.  That's what's happening with my husband, he doesn't think it will help him and I find this very frustrating.  I understand your feeling of loneliness.  When I married my spouse it was for better or worse and I just trust God to help me everyday.

[lb50258545]

This has been a truly emotional day for me and I don't know why!  My husband's physical health seems to have improved but I know how this situation works.  The ups and downs of this disease are frustrating at best!  I contacted a chiropractor in North Carolina who deals with brain trauma and he suggested increasing the amount of fat for my husband so I have and I do believe it has made a difference.  My husband has been much more awake in the last month than he was before, of course it could be that with the weather change that caused the awakeness.  I don't know.  Anyway I spoke with the chiropractor again and now he would like to see my husband's blood work.  So I called his doctor up here and my husband is to have his blood drawn tomorrow.  I'm hoping he will let them do a blood draw, but honestly I know it's making me anxious because my husband just doesn't respond well to such things.  Hoping for the best!  Thank you for reading!

[mc12482423]

Congratulations on finding a health care provider who suggested a nutritional means of improving your husband's situation.  I wish someone would have had such helpful suggestions for my husband when he was sick. All we got were tests and tests an presriptions and prescriptions. I will say though that you are probably the only person who can persuade your husband to get his blood drawn. He is more dependent on you than probably either of you realize. My only other suggestion is to ask for help before it's so late that caring for him is more than you can handle. There are available respite day programs with Senior Care that would give you a full afternoon off once a week so your mind can rejunivate. Do take care of yourself !  It is not selfish, it's essential for both of you.

[Grammarian]

You didn't state what type of illness your husband has. At any rate,.why would you consider a divorce? What happened to your vow "for better or for worse, for richer or for poorer, IN SICKNESS AND IN HEALTH?" My husband has dementia, and I would no more consider deserting him than he would consider deserting me if things were turned around. Again, you did not say what the problem is with your husband, but whatever it is, it is time for youl to stop thinking of yourself and start thinking of the man you vowed to love and to cheris until death do you part. 

[Jlincoln008]

Good evening, Grammarian,

I missed it: who said they were considering divorce?

You are hanging in there, that's for sure. Your husband is a lucky man.

Jane

[Jlincoln008]

"Too busy" is a cop out. Is there a very good friend who could make calls for you? It's demoralizing to hear that someone can't help you, so get a friend to ask. Make a list of what would help. Once a week mowing. Come by to sit with your spouse for two hours, even if all they do is watch tv together. That way you can get away for a couple of hours. What have you tried? Do you belong to a faith community? The pastor may have suggestions about how to recruit help from within the church, mosque or synagogue.

[Jlincoln008]

It sounds like a heavy burden. Are there any 'in person' support groups near you? The Alzheimers Association has a list of groups. Do you have adult children who can at least give you a few hours' break?  Can you hire an aide for even just 4 hours a week? (the minimum at most home health care agencies.)  That $80 or so would be well spent. It's cheaper than therapy!

How could he get better if he acted?

Please keep sharing!

[mt7924576]

Hi Mary,

I am also Mary and yes I take care of my spouse.  I certainly know the alone feeling with him hear I feel I have no one to talk to and when I do talk he just stares at me.  My husband is quite advanced now and I have moments of severe frustrations.  I just joined this site and hope it helps you and I.

Mary

[gc22406869]

Yes, I am taking care of my wife (2) years younger than I am.  She has a mitochondrial mutation that affects her in many ways.  She has had 4 strokes of which there are no visual affects.  There are some problems with communication (aphasia) and mental cognition.  This condition means she will have more strokes and early on set dementia.  Some seems to be already manifesting itself.  It also means that she has to feed through a tube each night (nothing by mouth except meds) and periodically her whole digestive system shuts down.  She manages her feedings each night herself.

I am responsible for everything else in the house.  sometimes i just feel overwhelmed.  Her son could provide me a break in the past if I just needed to get away.  Unfortunately he did a header off a 3rd story balcony last fall and died at 31 years of age.  Thanks for letting me vent.  I need someone to talk to about this.

Gary f

[pg80821765]

I am taking care of my husband, we found out a week and a half ago he passage 4 Pancreatic Cancer. It has taken a major told o. Him. He is in he anger stage right now. I don't know if your wife has gone through this stage but it is so hard. I can't do want thing right. I k ow he doesn't mean it but it still hurts.

Your vent helped me feel better because I felt like I wasn't the only one feeling that way. Thank you Gary.
Pay G

[Jlincoln008]

I read both of your posts and i think, wow, once again, spouses taking 'in sickness and in health' to heart and living by it. I'm also thinking, it takes a village...

I'm worrying about how to reduce the burden and your isolation, before your own health suffers.

If you type in your zip code into www.eldercare.gov, you'll find an Agency on Aging in your community. Go make an appointment to learn what services are free, or which ones have fees, that could help. Are Adult Day programs available? Even one day a week would help. Is there paratransit or an elder transport option?

How about hiring a professional caregiver? Just once a week for 4 hours could give you respite to get out of the house alone. It may cost 20 dollars an hour, but 80 dollars (for 4 hours) is cheaper than psychotherapy!

Do you know about the Well Spouse Foundation?  They offer in person as well as online support groups. As you say, no one quite understands unless they are in the same boat. They're listed by state: http://www.wellspouse.org/united-states/

Do you belong to worship communities? Has anyone asked you, let me know if i can help? Take them up on it!  Be specific. "can you by any chance mow our lawn every couple of weeks?" "Could you sit with my husband (or wife) and watch tv while i go to the store?"

You don't have to do EVERYTHING yourself. It does take creativity and gumption to ask for help. Do you have a close friend who can help you ask? This saves on awkwardness.

Is there a "village" in your area? Here's an explanation of what they are, which is basically a volunteer staffed group that helps 'members' who are neighbors help those who need help to stay in their homes: http://assets.aarp.org/rgcenter/ppi/liv-com/fs177-village.pdf

Anyway, that's a lot. I'm working as a geriatric care manager, and in my job, i try to create a 'village' around people who are in need of help. Some forms of help cost money but not all. Your own health may suffer if you get no relief.

What do YOU do to get a break?

Please tell us how you cope, and share your wisdom. So glad you posted.

[jo6115]

Jane, thanks for the gold mine of information.  It's great to have you here with us.  My husband has type 2 diabetes and will not be diet compliant.  He takes oral meds. Also has vascular dementia and other problems. He's only 65.  And nothing is going to get better, unless I can force him to eat better. HaHaHa.  He took social security early when he became disabled.  I did too; I was only 52 when my doctors forced me to stop work and start the long SSDI process.  So neither of us gets what we would have in benefits if we were older when we started collecting. Me especially. Our 29 year old son with autism and schizoaffective disorder lives with us too.  Guess who his caregiver is?  It's truly challenging being a disabled caregiver to two disabled men with cognitive and communication issues, among other medical issues.  I have POA for husband, conservatorship for son.  A consult with a lawyer specializing in elder law and special needs law will soon be on the agenda.  Again, thanks for sharing your knowledge.