Caring for a spouse

Hi Daisy,

Welcome to Caring's groups.  I'm really glad you found us and posted.

I'm going to agree with you here...you're in a good old-fashioned pickle.  My mom is my dad's caregiver and I've talked with her a lot about how their relationship has changed from being a partnership to something more along the lines of a patient/caregiver interaction some times.  That's frustrating in the best of circumstances, but it sounds like you didn't have the greatest circumstances to begin with. 

Have you considered having some in-home?  You may also want to contact your local Alzheimer's Association.  It's possible they have active support groups in your area. 

Keep us updated! 

Hi Daisy -- I agree with Missy that you need some support. Your situation sounds really tough. I'd also recommend trying to find a caregiver support group in your area -- your physician (or your husband's) or your local hospital should be able to give you names and contact information; I hope some other caregiver spouses will join this group and share their experiences. Good luck and keep in touch.

Thank you for you response. I have tried to find local groups in the area with out any success. I am still looking. Hopefully I will come across one in the near future. In the meantime I am busy trying to get my life in order so I can be whole person again.

i am glad, i finally found this site , a site that will eventally help me with the rough situations in my life. and i really do hope i would find the help i need to clear off the mess in my life.

My husband has Parkinsons disease and I am the only caregiver.  I find it very difficult to know when to take full charge and when to let him do as he wishes.  His signals to me change constantly.  Sometimes he wants me to do everything and at others he is resentful of me taking charge.  Some of this is his natural personality and I know some of it is the disease.  He is often obsessive about something he wants to do and I have trouble talking him out of something that is impracticle for us to do or too expensive, etc.  He then sulks and gives me a hard time about it.  I really am afraid of what the future holds for me.  He will explode over nothing and out of the blue.  I never know what will set him off.  Does anyone else have these kinds of issues and found a way to cope.  We have been married 58 years and it has been up and down over the years.

Hi mls, what a relief to hear from someone else that is having some of the same problems I am having. The anger is a hard thing to cope with. In my case and probably in yours too, they just do not have the capability to think clearly about what they are requesting or about how they would like things to be. I resent being put in the position of having to be the one to put up with this situation and I think admitting it is half the battle. I am human too and just do not want to always be mellow and say to myself  "it is just the illness and he cannot help it".  I can admit that too. I called his brother and asked if he could come and stay with him and his girlfriend for a week to give me a little respite and what a mistake that was. After hearing what an awful person I am (his opinion, but then what does his opinion mean to me.....NOTHING). I hung up on him. The brother would not help with their father when he went thru the same thing so do not know why I even wasted my time calling him. The care of the father at the time fell on my husband and his wife at the time. I was not in the picture at that time but did hear about it. I am going to refer to my husband as H from here on, H has never had any children and no other relative except his brother and a sister who is wheelchair bound and lives a long way away from here. He has no one else but me but still I really resent this. I have children who will care for me when and if I get to this point. Thank God for this fact. I know I was not much help, but it has always helped me to know others have these same feelings.

Hi Daisy 3rc, It felt good to just vent this morning.  I had had a bad time this morning and it just hit me wrong.  I am lucky to have 3 children, but they don't live near, the closest is 4 hours away and all are very busy with work so are not much help.  My youngest, the only girl is actually more of a hindrance, she keeps trying to tell me how to handle things and is very bossy at times.  She now thinks she knows better than me.  I am a naturally the take charge type and where I should let up on that is a constant problem.  Thanks for answering so fast, it is good to talk to soimeone else, i have not been able to find a support group that is in my area.  mls

Hello again mls, I too have not been able to find a support group in this area either. I can relate to how your kids are...mine are workaholics too. Seems like that is the way it is in this day and time. My oldest is a girl and it makes me sad to see other mothers out with  their grown daughters having a day out together. Sad for myself since my daughter lives so far away. Ten hours away for me. My sons are closer with one that lives a couple blocks away but he is starting a new business and does not have  much time for anything except that right now. His wife has a job that requires a lot from her and even my grandson at the age of 10 is involved in a lot of activities. I will add that if I need my children, they are there for me though. I have noticed one thing about them, they seem to look at me as I was when they were home with me. Cooking, sewing, cleaning and all those things I don't do much of anymore because I don't have to....lol. I do have a part time job that keeps me sane, just hope H does not get so bad as I would have to quit the job. I have looked into placing him in assisted living but we make just a little too much to qualify for help from the system, but not enough for me to afford to pay for it. I have found out that is the case for a lot of us seniors. If only we had fore sight instead of hind sight.  Daisy

 Hello,

My husband has COPD, IPF, CHF, DVT, Soriasis, Macular Degeneration and he's a bleeder due to the Warfarin. I''m going into the 12th year of home caregiver. Before this I was a long distance caregiver to my parents before they died.. And also to my mother-in-law who lived to her 99th year. I've probably driven 10,000 miles in the last 26 years. I'd like to say I've been there and done that, but I know I haven't seen it all yet. However.as my husband's lungs fail, he is not only frail and unable to do what he did four years ago, the lack of oxygen affects his cognitive functioning. So he appears to be getting Alzheimer when it really isn't. I'm tired and I have my own physical issues to deal with, too.

My escapte is my computer. Martha Stewart doesn't live here. Senior Services helps with housework twice a week. I'm working on getting respitei relief so I can shop withouut worring about coming home to another crisis. I have a pharmacy at home, pulse-ox, flashlights and a doxen tanks of oxygen. I can deal with most crises. What I can't deal with is coming home to a corpse.. 

We have good days and bad days, but for the most part we accepted the diagnosiis for what it is and the challenges it brings, and deal with it day at a time. The worst thing though is my daughter. She has Lymphoma and is in the end stage. Modern medicine is awesom. I never thought I'd see the day I could buy Opium in a liquid or medical grade Weed in a pill. She has a licence to buy it to smoke too.

I've been fighting HMO doctors, dirty hospitals and ignorant nurses for so long I could write a book on what's wrong with US medical care. t's a billion dollar cash cow that beneifts everyone but the patient. 

I'm always around to chat. I don't have a network. . 

Wow linicx, I can really sympathise with you. It really proves no matter what is happening there is someone out there that is worse off. You got more than your share to deal with. I truly hope for you there will be a better day someday.....Daisy

Daisy3rc ,mls, lincx and others married to or partners of someone with a chronic illness/disability::

You've taken the first step, in identifying that you are spousal caregivers -- many go for years married to their ill spouse, not even thinking of themselves as caregivers, while all the time they're making adjustments, trying to compensate for the effects of the illness.

The needs of spousal caregivers differ from those of other family caregivers, chiefly in the areas of losses in the intimacy relationship, and higher financial stress, due to a great number of single-income families with high medical costs out-of-pocket. 

Best, Richard

 What's going on here? The broken anchor includes a blank target.  It looks like a redirect. I'm not buying it. Sorry. 

 When you are a spouse/caregiver things are very different.  I was a caregiver for my mother, 22 years ago and my dad, 9 years ago.  My husband had a brain stem anurisum which resulted in a massive stroke 11 years ago at age 51.  I have been the only caregiver for the past 10 years since he came home from the hospital and I am totally burned out.  I have 3 children who are involved in their own lives, as it should be, so little or no help there.  I had Visiting Angels come when I went away for 3 days but the cost is very high and I couldn't do this again.  My husband is paralized on his left side, has speech and sight problems and can't dress himself. His brain is affected in some areas by the stroke and needless to say there hasn't been any husband/wife relationship in 11 years.  I feel that I am in a position that will never change and I have no options. I truly want to leave this relationship (?) and try to move on with what I have left of my life.

Search "spousal caregiver" on Google. You may find something there.

 I wish I could sit down and talk to anonymous poster as we have a lot in common as I cared fpr my parents and helped with my mother-in-law for ten yars before my spouse became ihandicapped. Luckily I am able to attend church once a week in the evening, and I can still get away to shop as needed. 

Since I began to care for my spouse we have weathered blindness, failed quad bypass, CFH, blood clots, two lung diseases, MRSA and Psoriasis together, and more than a few emergency runs to the hospital in  addition to the every other week blood tests and special diet.   In the middle of this I lost a son, three brother-in-laws,.a sister-in-law. and my daughter is in the end stage of cancer.  

The local senior help service was a helpless, useless, expensive experiment in frustaration. And people around me wonder why in the hell I am angry and tired and frusttrated. I particularly enjoy the "I know how you feel" commets from the young know-it alls that haven't buried a child or threatened a sick parent with dire conseqiences to get them to a hosptial to save their life one - more time.    

There is a huge difference between being a hospiral socical worker and someone who does this 24/7 without hope, help or enough financial resources. God bless the spousal caretaker. No one else will. 

I can be cpmtacted at tazewell [dot] cc [at] gmail [dot] com

I was my husband's caregiver for 13 years.  He was diagnosed with lung cancer in 1994.  He had lung surgery and radiation but the cancer metastacized to his brain one year later.  The tumor was treated with large doses of radiation and chemotherapy and eventually burned out.  Over the next 6 or 7 years, Jim was plagued with frequent t.i.a's and he began having problems walking.  He was seen in the emergency room and Dr. offices more times than I can remember trying to find a cause for these problems.  He had numerous falls, even breaking his collarbone.  After many MRI's and other follow ups, it was determined that he has vascular dementia stemming from the radiation to his brain and the subsequent t.i.a.'s.  This diagnosis was finally made in December '07.  Over these years leading up to the diagnosis, I noticed changes in his personality and his mood.  He was still driving.  His judgement became very poor and he became very impulsive in his behavior.  We began arguing.  I couldn't understand why this easy-going man was becoming so difficult to live with.  Once we received the diagnosis,  his odd behaviors and personality changes began to make more sense. 

I was working full-time and trying to make sure he was safe at home alone.  I had a First Alert put in the house so that he could call if he had a problem.  He could push the button on the necklace around his neck and someone would answer to see what he needed.  He often would forget where I was during the day and become frightened.  He forgot how to use his cell phone and the remote for the t.v.  By this time, I had sold his pickup truck so there was no danger of him trying to drive.  (He ran into a neighbor's mailbox, tearing the mirror off his truck but never noticed and kept on driving home).  We were sleeping in separate beds by now because he tossed and turned all night.  He would get up in the night to go to the bathroom and fall.  His falls became commonplace.  How he didn't break more bones, I will never know.  My sleep was constantly interrupted and yet I had to get up at 5 to go to work the next morning.  My stress level was off the chart!  I couldn't take any time for myself.  It was a constant 24 hrs of stress each day. 

In November of 2007, it was suggested that Jim go into a gero-psyche unit at a nearby hospital for evaluation.  That was a terrible experience for him and for me.  While they attempted to find the right combination of medications to control his depression, aggression and anxiety, he was tormented by hallucinations, anger and comatose-like periods.  He returned home right before Christmas.

I talked with friends and ladies in my Bible class at church.  I had a lot of well-meaning friends giving me advice.  Many told me I needed to put my husband in a nursing facility.  At first I was so opposed to the idea.  I insisted that this is MY HUSBAND!  I will take care of him.  I could never arrange for him to be in a nursing home!  As time passed and his needs became greater, I came to the realization that there was no way I could continue to meet all his needs and still have my health.  I was quickly feeling the pressure, the exhaustion and the overwhelming responsibility.

I was fortunate to find a nursing facility close to home with a caring staff.  It took getting used to.  I hated it at first and it seemed all I could see was negative.  As the weeks passed, I realized that this was a good place, there would be people able to assist him 24 hrs per day and I could stop by anytime for "quality" time with him.  Now when I go to see him in the evening after work, I am relaxed and he is happy to see me.  Our time is special.  I am able to take him for a drive on the weekends.  I get help getting him into the car and back into the facility when we return.  We are making the most of the situation.  With God's help, I am coping and I am able to see the glass as half full.  No, it isn't the way we pictured our later years but it is what we have to work with.  I thank God for His faithfulness in helping me to get to this point.  If I can be of any help or encouragement to anyone going through a similar situation, I would be very happy to.

This is Daisy again. H went to the emergency room two weeks ago Sunday. The doctor on call told me he was not going to make it since one of his kidneys was not working at all and the other one was not working much. They called me in the morning and said they were sending him to a facility for "care and comfort" which is like hospice but not at home. The doctor said he would be covered for three weeks and if he made it past that he would be transferred to long term care which I would have to pay for since our medical only covered Skilled Nursing. I did find out at that time that California does have a program for people that make too much money to qualify for our state medical coverage.(Med-I-Cal) that will pay part of the costs of long term care. We would qualify for this since we do not have a house or any assets but make a little too much to qualify for the state program for low income people. There would be a large co-pay but I as a spouse would be able to keep enough of our income to live on. Long term care here runs about four thousand dollars a month. If I did quit my job, we would qualify for free long term care through the state, however, when he dies, I need my job since I will not have enough money to live on then. I am almost 70 years old and would not be able to get another job like the one I have. Especially since the economy is the way it is, so quiting my job is not an option. I found out about this program through the care facility that he was sent to.  I had been searching for something like this on line, calling the state even going to the county offices and the state offices and no one seemed to know anything about any help for people like us. H was at the point that I was not able to care for him at home. After he got into the facility someone called me and said that he would only be covered for two weeks instead of three weeks. I applied for Med-I-Cal within the first week, and was waiting to hear from them which takes about 45 days to process, but the facility was okay with that. They transferred him to long term care, after the two weeks, on another floor in the same facility and the next day he passed away. I am going to talk to his health care provider to see if they would honor the doctors request for three weeks so the one day will be covered also. I am glad I do not have to follow through with applying for state aid for this since it was really involved and as long as I can take care of it without any help from anywhere else that is fine with me. It is just too bad that this information about getting help from the state for this care is not easily available for others. It was very frustrating knowing before that the day was comming that I would not be able to care for him and just did not know where to turn or what to do. Sometimes these last stages of life can drag out for a long time and the person living it has zero quality of life. He was at that point so really it was good that he passed away when he did. I think as we age we look at death differently than we did when we were young. I know adult kids do not like to discuss with us what to do when we pass but we as older folks want to make it as easy for them as we can while we are still able to discuss it with them. I have made my wishes known to  my kids even though they did not want to hear it when it was first mentioned. I have let them know that when I pass, I want to be cremated and my ashes scattered in the woods along with my little dogs ashes and for them to come and have a picnic in the same area occasionally. It does not sound like much, but that is what I have requested and I know they will follow through.   Daisy

I too am in the caregiver for a spouse boat. My husband is in hospital right now and I really don't wat him to come home. He has had a quad bypass, a couple of strokes, an aortic anyerism and is now becoming bladder and bowel incontinent. I have been his caregiver rather tha his wife for eight years now and I am tired.

I am now afraid my anger will take over and I will hurt him--once recently I made him cry. I am turning ito a person I hate because I am so impatient with him. He is also diagnosed now with Parkinsons so perhaps that explains some of his awful moods. He falls frequently but doesn't seem to break anything. Because he is so week, it can take 40 minutes for him to get up.

My Mother is in a local assisted living facility and I am also her caregiver, She is so much better than my husband even though she is older and sufferring memory loss and because we don't live together I don't find her so burdensome.

I have spoken to my husband about going into care and he adamantly refuses--He is frightened by the prospect and considers it warehousing. Even though he has lost some function his mind is still good but his body has betrayed him.

I am at a loss--I don't know what to do but walking away sounds like a good idea.

Can any of you help me sort my thoughts out?

I understand 100%. I can see that before H went into the facility that it was not healthy for him or for me for him to remain at home. Of course they would rather stay home but in these facilities they get the care that they need and they are experienced doing it. Sometimes we just have to do what is best for them even though they object. There can be a lot of guilt involved in your case, but if you wear yourself down until there is nothing left that is not doing either one of you any good. I felt like the life was just being sucked right out of me. My doctor described it perfectly. He said I was screaming inside and if you look at it you are probably at that point also. I tried to explain to H that I needed to take care of  me too but they just do not want to hear it since they are so used to us being there for them. Can you maybe overcome  your guilt and go with it that he needs to go into care for a while so you can have some time to get yourself together and be firm about it. His doctor can probably talk to him about it too.  Expect him to object. Give it some thought and hope you can come to a decision that will benefit both of you. Daisy 

You are so right Daisy--I am angry and at the point of breaking into pieces. I have not done a single test my doctor has sent me for in a year and a half--I claim to be into natural healing but honestly I am afraid that if there is anything wrong with me I wouldn't have the strength to do anything about it, And this kid of action from oe who people consider an intelligent woman is just too silly for words. By the way, my spelling was always crumby (lol)--it's not a sign of stress

ckh:

There are three stages in caregiving, the Heroic, when you try everything you can to help your spouse get better; Ambivalence, when you have mixed feelings of compassion for and anger towards your spouse, as things do not get better; and the New Normal, when you work out a way of dealing with changes in your spouse's illness and balancing those with having some time for yourself, and a life of your own apart from the illness. The three stages cycle, it's not a steady progression, but the New Normal is the goal. Right now, it sounds as if you are in an imbalance, and that's where the anger comes in. I urge you to check out the Well Spouse Association, http://wellspouse.org [wellspouse.org] . I have also written a blog here, that includes back entries on the stages, here: http://www.carepages.com/blogs/lifeofwellspouse/posts [carepages.com]

Hi Daisy,

I hope you are doing okay. I was wondering if your husband has problems with memory loss? I ask this because I am a research assistant at the University of Michigan and we are currently conducting a study about remarried caregivers who are caring for a spouse with memory loss.  If you are remarried to someone with memory problems, perhaps you would be interested in participating in the study? If so, please let me know and I will email you more details.

Take care of yourself!

Sekai

Sorry Sekai, I will not be able to participate. H passed away last week. Daisy

Hi Daisy,

I am so sorry for your loss.

Take care.

Sekai