We've been married for 4 years, she became ill after 6 months of marriage. It's all heart related and doesn't seem like it will ever improve. I don't think I'm being selfish when I say I feel frustrated and lost. I believe that God will never give me more than I can handle, but sometimes I feel I'm just running out of gas. It seems every day is exactly the same as the day before. I guess I don't really know what it is I'm asking for here, I suppose I may have just needed a moment to express my confusion & frustration.
I used to scream at God, “Do you hear me, see me, care about me?”
I did that daily for years on end. I knew deep down that He cared but caregiving surely is a challenge!
I totally agree with your posting.
Thanks for expressing your sentiments. Many feel the same way!
This is said often, but harder to do...you must make time for yourself. Don't forget what makes you feel better. A sport, a movie, a walk, keep making time for yourself. And I know this is hard to do when we have so many other pressing things to get done in a day and always in the weeds.
See your doctor if things get too much. Sometimes we can get insomnia and that doesn't help matters. Or we get digestive issues, or other health issues crop up from the stress. Get help from your doctor. And get help with the everyday things too, like house cleaning, meal prep, etc. I know this might be impossible during the pandemic, but when feasible, get some relief this way. If you can stay covid safe, hire a caregiver several hours a week to help you. And go do something else when they are taking care of your wife. Do NOT stay in the house every day of every month. You must get out at least a few hours per week for your sanity.
Will your health insurance cover any services that might help you? Please think about meeting with her doctor and discussing caregiving options and respite care. This is most important to you right NOW. You need some support. When it's time for hospice, please consider it, and get as much time as they will allow. I know how hard it is to do the physical care daily for someone. It will beat you down. Think about calling Office on Aging, social services. Speak to a social worker, case manager, and have them advise you on what your wife might qualify for in terms of help. At one time, I used meals on wheels, which was a great help to me.
It is a very challenging and difficult job, caregiving. Hope some of my advice will be helpful to you.
Your view of Nursing Homes can be real. My friend's husband of many years also had a long-term illness. She was so against Nursing Homes for the same reason. She took care of her husband for several years. I remember running into her in a store and she had a knee brace on because she needed a knee replacement. She said she had a few hours of respite each day and was glad of it. Her husband had fallen a couple of times and she had to lift him or get help. I know the burden was great for her. Any way I got a call from a friend 2 weeks ago saying she died suddenly and her family was scrambling to find a nursing home for her husband. She was 73 years old. She died caring for him and he lives on. I feel so bad for her and him. But there are times long term caregiving can be risk to health and life for some caregivers.
We talk in our society about grieving someone's death, but that's not the only kind of grief there is in life. You've experienced a significant loss that's disruptive, emotionally and physically draining. For me, it took moving through stages of grief, especially anger and depression, before I was able to move on to acceptance with my husband's situation. In our case, it's a matter of the long good-bye - dementia - along with chronic health problems.
You've received lots of good feedback here. I know that I am truly grateful for all of the wisdom and experiences people share so freely. I hope you'll find what you need, too.
Best of luck to you and your wife.
What surprised me, though, was that by doing that, I was able to offload a lot of my stress simply by having a place to put it. I'm not like some dreamy 16-year-old who writes down all her hopes and dreams in a diary, but I found I was putting down thoughts and fears in addition to all the factual stuff I needed to keep track of, and by offloading that stuff, I felt it gave me an ability to go on longer than I might have otherwise.
I know very well what it's like to feel like you're running out of gas, so you need to find ways to give yourself a little more rope when you feel like you've come to the end of yours. For me, writing it all down then putting a away worked.
I don’t know all her medical history so keep that in mind when reading my comments. Lorazepam for anxiety is not the best idea. It does work well in the the short term but it’s addictive and make be making her tired. There are other more modern anti anxiety meds that might work better although they take time to kick in. And if she’s been on lorazepam awhile she might need to be weaned off it slowly due to addiction.
Lymphoedema is a real pain. Literally. Lots of doctors do not understand it properly and think it is the same as pitting oedema. It’s not. But you can have both. Pitting oedema is caused by excess fluid build up usually in the legs but can even be in the arms and trunk. If you press with a finger and hold it for a minute and then move it and it leaves a dent, that’s pitting oedema. Diuretics might help to shift it as well as tight stockings. Lymphoedema is different and has more to do with the lymphatic system and is much more difficult to treat. If pressing firmly with a finger is painful and doesn’t leave a dent it’s more likely to be this. But there are good clinics that deal specifically with it that she should take advantage of as good treatment can be transformative.
I suspect that her worst and most limiting problem is her anxiety. It will make all of her physical issues worse. Lots of things can help with anxiety including medications, counselling, CBT, cold water swimming, exercise etc etc. Her solution will depend on the background of her anxiety.
sorry to be so brief. There have been lots of great responses. Most importantly is that you sound burned out and need to remember to look after yourself. Remember that in an airplane emergency they say to put oxygen on yourself first, not to be selfish but so you are then able to look after others.
May God bless you and keep you and make His face shine upon you and give you peace.
I'm sorry. It sounds very difficult.
My father was sole caretaker for my mother for 47 years after she became paraplegic in her 30's. She was physically dependent on his care and as her needs increased over the years, my father would learn necessary new nursing skills to be able to take care of her.
My mother was mentally alert and could manage limited household tasks as long as supplies and tools were put within her reach if she was to be left alone. While my father was still working, he would get my mother up and dressed and prepared in the morning, wheel her to the kitchen where she could at least move around the room in her wheelchair, and make sure she had the telephone and tools and supplies were within reach. She was not able to move from room to room by herself, so there she was until my father got home.
They were married for 54 years and raised four children. Social gatherings, family trips and so on took more planning and preparation than they would for a family without a disabled member, but accommodations were always figured out and arrangements made and that was our normal life.
My mother was forever deeply grateful that her husband was such a capable and caring man, and my father was devoted to her and was happy and fulfilled that he was able to take care of her. Maybe my parents were unusual in how they dealt with their lives, but they were certainly a wonderful example to their children.
Forgive me for indulging a personal and perhaps irrelevant story, but jjas57's message brings back memories of how my parents dealt with their caretaking situation.
I admire your dedication in trying to do it all, and not at all surprised you are feeling frustrated and lost. Please, for the sake of your own health and sanity, get someone to help with her care. I find it hard to imaging getting by with just 3 hours a day of respite as someone suggested. And sleep is essential to maintaining your own health, it's not good to short yourself on that.
Best of wishes to you.
You are burned out and it's understandable. You have to make a decision. Either you get someone to care for your wife or you put her in a long term facility.
You need a life too. You need to care for yourself, physically and mentally. You need to do what's best for your wife and yourself.
Caregiving is not for everyone. Might it be possible for you to go back to your old company? Would you be able to hire a few hours of help for your wife at home? If not, I urge you to consider finding a job, getting out of the house, and re-establishing balance in your life. Sadly, many caregivers die before the ones for whom they are caring.
Your wife has serious illnesses, which are chronic. Certainly it is hard on you watching her decline in such a short time when you should be enjoying new-marital bliss. Unless you make some changes - and get your wife to take responsibility for her own health - you may be looking at caregiving for another 20+ years. Ask yourself if that's how you envisioned your life. Again, many caregivers die before the ones for whom they are caring. It's a real risk.
I know the concern regarding COVID transmission is a part of our lives now and well into next year. Ask all visitors to wear face masks over their mouth and nose. Try to visit outdoors or in the largest room with good circulation. If you have a room that can be closed off from the rest of the house (3 season room, family room, game room...) consider this your "social room" and only have visitors in this room and 1 bathroom. Use high quality filters for your furnace or a/c. Wash high touch surfaces like counter tops, table tops and handles after visits and before preparing foods. Wash hands frequently, Ask visitors to use hand sanitizer or wash hands when entering your home. With those precautions, risk of contracting COVID will be minimal.
pandemic. I am beginning to feel that I will have to take the risk and hire someone just to maintain my sanity. Good luck
The answer is not a simple one. Perhaps you will be one or a combination of those things, but you will also certainly be be older, and for at least a short while, disoriented and fatigued.
It's important to come to terms with the realities of your wife's condition, and your ability to cope with it for any length of time.
Is she terminally ill? If so, what is the prognosis in terms of time? Does she have dementia and is otherwise fairly healthy, because depending on age, you could be caring for her in such a state for MANY YEARS to come...
If you can rationally accept that you are only human, and a good human at that, you may be able to begin to reasonably discern: A.) The duration and course her illness may take, and B.) Your physical, emotional, spiritual, and financial ability to care for her for said course and duration.
Does she have any family? Any resources, human or financial, to assist in this process? Being a caretaker from 6 month of marriage is a hefty burden and you are not a monster for thinking so, nor are you cruel to imagine how you can remove yourself compassionately from this situation.
Check out the NIH and subsidiary NIA. Look up your state's department or coalition on aging, there may be great information to assist you in figuring out what to do next- the county you live in may also have a similar website or resources.
Remember, if she is truly disabled, she will likely be eligible for Medicare and social security. Similarly, you may be able to collect a stipend for cating for her which can ease the burden financially. You may have to take a short course on caretaking, but anything helps, and honestly you probably know most of what they're going to teach you anyway, so it should be a breeze.
As a 34 year old caretaker of two grandparents in their late 80s since I was 30, I have run the gamut of similar sentiments, and they are never easy to come to terms with or rationally hash out.
Bottom line: if you can achieve the monumentally difficult task of separating the emotions from the crucial accounting of the material facts, and add a heaping dose of your own wishes to how you would like this delicate recipe to turn out, you will be so much better off.
God bless you, and good luck!
I would suggest you find a caregiving support group and attend regularly. In your case if she doesn't have memory loss, I would suggest a support group for illnesses that are NOT for memory loss. If she does have memory loss, find a support group strictly for memory loss. There will be differences to learn from these type groups that will help you cope, help you find ways to cope, and how others' handle situations. If you're not in upper years, find an advocacy group by asking your doctor or some other agency to help you find a caregiving support group. If you are senior, start with your Area on Aging in your State or County, they are resourceful agencies to help and lead you to some kind of help for yourself, and for how to care for your spouse.
If you can afford it, look into volunteer caregiving support, or individual people who are caregivers for less $$ than a caregiving company. If you are able to leave her for a while, go to an afternoon movie, (if theaters are open now during Covid), go to an afternoon lunch; golf, find a horseshoe group or pickle ball group to play or some other activity. If you are truly in love with your wife, you will find great help in your caregiving by the support group or getting a friend or relative to give you some respite once in a while. If you aren't happy with the situation and want "out" then see your lawyer. If you keep on caring for your wife without "support" and you are unhappy with your life as that is, you will only wear yourself down and get to hating life in its entirety and hate your wife as well.
Ask your doctor to recommend some type of help you can get, and initiate legal activities to care for her and you. Some of the Area on Aging departments of counties/State also have some lawyers doing pro bono work for individuals who can't afford attorneys. Good luck to you and your wife. Take care yourself as you take care of your spouse. Pray for guidance.
Thank you for telling us about the beautiful way you are moving through life's journey.