No longer a wife, now a caregiver.

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Over the past two years my husbands medical issues has increased. He sees at least 6 different specialists. He has lug cancer and has been and is presently being treated with immuno-therapy. He would not have survived chemo nor a second bout of radiation. He has been urinary incontinent for over a year with the condition getting worse dailey. I have shields, pull ups, wipes, creams and a urinal by the bed at night. He is now having difficulty using the urinal so the bed is wet. I have washable covers but the laundry days have increased. I am constantly mopping floors, Taking out soiled diapers ( when he decides to wear them), doing laundry and trying to keep his depression at bay. Oh, getting him to wash or shower regularly. He is 79 and I am a very tired 74 . I am frustrated. I have tried to have conversations about this but not either he's not listening or just doesn't care. Frustrated and Very Tired

 

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I understand your frustration, but imagine how he feels. The thread title says “no longer a wife” but your vows say otherwise. I would recommend seeing a therapist/psychologist to vent.
Pulls ups aren’t a very popular item in the incontinence world. They are prone to leaks and are poor at containing odor. I’d contact a company like NorthShore Care and have them help you choose the right product.

 

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HI Eujack. I was younger when my husband developed alzheimers and had periodic accidents. But it lasted for seven years before he died from a heart attack. It was a very lonely time because most of our friends didn't know how to handle the situation and so stayed away. I remember, during that time, reading an article about a woman who left her husband when he developed alzheimers because he was no longer the man she married and she couldn't be married to a man who "couldn't carry on a decent conversation." But the article was written by her daughter who deeply resented her mother for leaving her father. I could understand both of them and their feelings. But it helped me to clarify my own thoughts. There were many days I would have loved to walk away from my marriage. Probably every day at some point in the day. But I thought about what kind of example that would be for our son. What would he think of me if I gave up on his father? And then again, what if the situation was reversed and I was the one with alzheimers? Wouldn't I desperately hope for my husband to stand by me and help me?

I yelled at God a lot during that time, but I never worried about yelling at Him, I knew His shoulders were broad enough to take it, and it was better than yelling at my husband.

I depended on Faith, Family and Friends ( the ones who stayed around) to get me through. And a good escapist mystery novel at the end of the day. And it was day-by-day.

Eujack, your life is very hard right now. And I empathize with you. But this won't last forever, even though it seems that way. I will keep you tucked into my prayers.

 

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Very Nice Thoughts Emily

 

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Maybe time for assisted living...before this kills you.

 

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I thank each of you and am sorry if I gave the impression that after 40 years if marriage I would give up. I think a little late for that. Spaz, I am on the wrong site with you. I understood this was just a place to vent, perhaps receive suggestions that I have not thought of or tried yet. I thank you Emily for I am definitely doing some God yelling and at the same time have to give Him my thanks, love and yes faith. 56, I have often over the past 2 years see this as a maybe someday. I have good support from our family and our children but I think they too get tired of even hearing it. My choice of: No Longer a Wife, a Caregiver was because I just had a new therapist for my husband who said that he has to listen to the patient and not the caregiver. I just smiled because my husband is not much of a conversationalist these days and has not been for a while. If he was I would not be on this site. Thanks again, this was just a few really, really horrible days.

 

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Hi eujack,
Just wanted to say my prayers are with you guys. My folks are older and dad has Alzheimer’s and Parkinson’s. Prays for all who are caregivers and spouses. It is not easy. You are welcome to pm me if you need to chat or vent. Glad to be a good listener if you need one.
Kind regards,
Jim

 

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eujack - spaz is on the right track when contacting northshore. Pull ups are often not enough and briefs are needed. Northshore can help you find the right product for your husband. Their website is http://www.northshorecare.com

I wish you all the best

 

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Thank you justej, I am going to look at Northshore right now. I really want to keep my husband in our home. Only 1 member of my family has had to be put in a nursing home. It's just that I seem to have been a caregiver for over half my life. As the song goes, "God didn't bring me this far to leave me. Again, thanks to all of you.

 

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Would his insurance cover a home health aide? It would give you a break if you had a helper.

 

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Have you thought of contacting your local Office for the Aging? They may be able to refer you to, or, in best cases, provide a social worker who could assess the situation and let you know what home-care benefits are available. This is especially important if you are insured by/eligible for Medicare and/or Medicaid. I understand your feelings: my husband is physically disabled, and his condition is deteriorating. I don't have it as hard as you do, but there are times when I just need a day off... Even a part-time home health aide or some kind of respite care would help. Take care of yourself (easier said than done, I know). You sound as if you are close to "worn out."

 

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There's a lot of barriers and hurdles. From the red state of
Texas, to the blue state of California - neither of which want to pay anything, particularly for senior citizens, disabled, etc, so passed laws to make it impossible (but the titles of the laws sound so good.)
Respite is one great help. Try your pastor, and if that doesn't work, try another one. Pallative care isn't just for pain and the dying, depending on the community and state - or the people there can refer you. Ask your medical providers for recommendations for other help, if they can't help. Some hospitals and really big clinics have a patient/family help department (Virginia Mason in Seattle,for example). The hospital Pastor.
Check the websites of hospitals. Local ones, the teaching hospitals with a school of medicine (Try University of Washington or the equivalent), or a famous one - say Mayo, Cleveland Clinic, or just the best rated one in a big city near you. It doesn't even have to be in your state, if your state is coming up zero-help. Not necessarily for the doctors, but for the advice and information and teaching tools.
Find a big Library or even a University Library, find the Reference Librarian, ask her how and where to look it up. My mother was a librarian, about had the Dewey Decimal System memorized, and could lead you right to a subject, but the Library catalog computers can do good research if you type in subject matter or let the Librarian help you figure out the subject matter to type in.
Good Luck and God Bless.

 

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This is a distressing situation all round, for your husband because he is so seriously ill and for you having to shoulder so much of his care. When your role changes from wife to carer that is a huge shift and loss - I think of it as a bereavement and like any bereavement the feelings are mixed, with anger certainly there, as in 'I didn't sign up for this'. The marriage stops being a relationship where there is equality, intimacy and friendship and becomes something very different where both parties have to learn new roles - he to accept help graciously, you to give it. This can be extremely hard to do. I write from personal experience of having a wheelchair-bound husband for the last five years of his life and I'm all too familiar with floor-mopping, pee bottles, wet sheets, broken sleep and middle of the night disturbances of one kind or another.
Our American friends on this site are unlikely to understand the complexities of the British care system and I found with my husband that there was no help from Social Services at all - we were assessed several times with no good result though they did eventually arrange for a new bed. This arrived two weeks after he had died. It did help that we were able to pay for a carer in the mornings who got him up and did the washing and toileting. I assume you're getting the Attendance Allowance at the higher rate, pathetic though this is.
You haven't asked for advice and what worked for me may not work for you. But I did find it helpful to acknowledge that I needed some space for myself and I made the 'rule' of having one 'treat' every day, which mostly was something very small and 'free' such as a walk in the park.
I wish you well
Jenn

 

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Again, I am smiling so much today after reading all of your responses. We have a Medicare ppo. Do not qualify for other programs because we are.99 and in one case .01 over the guidelines. He has treatments every 2 weeks and doctors appointments in between. I drive I just applied to Area on aging who referred me to Passport in my state a Medicaid program I think. Hopefully I only have one more document to give to them before I I know if my husband qualify for just someone to help with his showers and bed making. I would be sup happy if just that. I am always afraid he will pass out on me in the shower and changing the bed two or more times a week really hurts my back. ( just a quick pity me party with that last line).After one of the most tested I did have a talk with him about wearing the depends all the time and if he makes to the bathroom fine if not just change your underware. He told me this morning that he did that last night and was very proud that he only had to change one. Also proud that he didn't have to wake me although it did take a bit of time. So I thank you even if he only remembers this every once in a while.

e

 

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It may be quite different from what you expected when you got married all those years ago, but it looks to me as if you are being a good wife by coming up with an idea that makes your husband feel good about himself. I know only too well the frustration of having just a little bit too much money to get any help at all. If only there were a sliding scale instead of an abrupt cutoff... I'm glad that we gave you a reason to smile.

 

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E, I will listen, listen, listen, to any pity party you want to convey.

 

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Well, I am back! The past months have been filled with doctor visits, testing, social workers, and locating documents, scanning and emailing said documents in an effort for in home assistance. Now, I have a more tiring issue and looking for ideas. My husband now uses a urinal at night. Problem-he sits on the side of the bed, pulls down the depend, because it does not have an opening; not far enough away from the side of the bed so urine goes on the sheet and carpeted floor. I bought a washable long pad on cover the side, doesn't work. I just bought disposable pads (the large ones and yes the pad got wet but so did the sheet and the floor. I am washing bedding and carpet every day and I am tired, back is really hurting because I am making his bed every day. Suggestions for this? Thank you.

 

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Honestly, we have a similar issue with a close relative. I would say honey I love you and you need to help me to better help you. Put him in a diaper and tell him to sleep until morning. You have your own health and well-being to consider also.
I was asked to buy a commode chair for my relative and that didn’t work so well. Ended up having to put down a shower curtain on the floor because of not being able to aim or get to commode in time.
Ended up having to replace the carpet because it got ruined over time.
I know for him it’s not ideal, however, you can’t play caregiver 24 hours a day without taking care of yourself also.
He and you will both getter a better night sleep and you won’t be doing laundry everyday.
Call Northshore and get a couple overnight briefs to tryout. I use them for myself and finally can sleep through the night and sheets are dry. What a blessing.
Good luck, hope he considers this as a much better alternative.

 

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Eujack and Emily- I feel for you two. My best friend is 82 and he had to put up with all of this. No, he wasn't the patient, he was the caregiver -- at 82! His younger wife just recently died after 17 years of Parkinson's. Seventeen years!! She had paralysis, incontinence, delusions, hallucinations — all of it. I know I really cannot imagine what all you are going through, and what he went through. What strength you have. Brava!!

 

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Agreed, you both have tremendous strength. May all caregivers everywhere be Blessed Abundantly. Please take a little time for yourselves too. That it so important.